The outcomes assessed in cancer survivorship research do not always match the outcomes that survivors and health system stakeholders identify as most important in the post-treatment follow-up period. This study sought to identify stakeholder-relevant outcomes pertinent to post-treatment follow-up care interventions. We conducted a descriptive qualitative study using semi-structured telephone interviews with stakeholders  across Canada. Data analysis involved coding, grouping, detailing, and comparing the data by using the techniques commonly employed in descriptive qualitative research. Forty-four participants took part in this study: 11 survivors, seven family/friend caregivers, 18 health care providers, and eight decision-makers. Thirteen stakeholder-relevant outcomes were identified across participants and categorized into five outcome domains: psychosocial, physical, economic, informational, and patterns and quality of care. In the psychosocial domain, one’s reintegration after cancer treatment was described by all stakeholder groups as one of the most important challenges faced by survivors and identified as a priority outcome to address in future research. The outcomes identified in this study provide a succinct suite of stakeholder-relevant outcomes, common across cancer types and populations, that should be used in future research on cancer survivorship care. Nearly two-thirds of all individuals diagnosed with cancer today will survive long-term . The risSince the IOM report, many interventions have been tested, in both research and practice settings, to improve the survivors’ outcomes during follow-up care. However, the reality is that many studies lead to null or mixed results ,5,6, andWe conducted a descriptive qualitative study  using seOncology providers, primary care providers, and decision-/policy-makers were recruited via cancer programs/clinics across Canada; provincial and national organizations, groups, and networks ; and publicly available information in each province and territory . Participants were also asked to identify individuals within their organizations who had an interest in cancer survivorship/follow-up care using a non-probability snowball sampling technique. The PI [RU] initially approached all potential participants via email. If the participant responded in the affirmative, the research associate [SM] followed up to discuss the nature and purpose of the study and to arrange a time to conduct the informed consent discussion and interview. If the potential participant failed to respond to the initial contact within one week, a second follow-up email was sent.Survivors and family/friend caregivers were recruited by distributing study information through cancer, cancer survivor, and caregiver organizations. This included support groups and networks, and patient advocacy organizations. Interested persons were instructed to contact the research associate by telephone or email to acquire further information about the study. If the person wished to participate, the associate arranged a time to conduct the informed consent discussion and interview.Data were collected by the research associate via one-on-one, semi-structured, telephone interviews. The interviewer had no prior relationship with any participants. The interview guide  was deveData analysis involved coding, grouping, detailing, and comparing the data by using the techniques commonly employed in descriptive qualitative research . In geneForty-four participants took part in this study. Participants repeatedly described three psychosocial outcomes that were particularly relevant to follow-up care: reintegration after cancer treatment, fear of cancer recurrence, and anxiety. One’s reintegration after cancer treatment was described by all stakeholder groups as one of the most important challenges faced by survivors and therefore identified as a priority outcome to address in future research. This reintegration was described as adjusting to a new normal, and characterized by ongoing challenges associated with changes to physical functioning or appearance, emotional well-being, and social relationships and roles. For example, related to relationships, one participant said:A lot of people aren’t prepared for the culture shock. That they may have had a great relationship with somebody for, you know, 5, 10, 20 years, and all of a sudden that relationship doesn’t exist. Or even partnerships, you know, marriages…[P4 Survivor]Related to adjustment, survivors also talked about the difficulty of feeling comfortable in, and trusting, one’s body again after a cancer diagnosis:It’s still your body that has betrayed you. And you get this very weird sensation where you’re walking around going, ‘I don’t trust me anymore.’ You just become disembodied. Your body is now the enemy. And it’s a very, very strange place to be in your head, to be thinking this body—you know, it’s the only body I have—is now something I don’t trust. That’s hard. That’s a real hard one.[P7 Survivor]Finally, many participants recognized the challenges that survivors face returning to life after treatment when those around them expect them to easily resume their pre-cancer roles and activities once treatment has finished:I think they struggle to say, ‘okay, I’m over my acute treatment, how do I sort of get my life back on track, how do I become normal?’ Because there’s expectations from those around them that suddenly they’re done and they can assume those roles.[P22 Health care provider]Fear of cancer recurrence was emphasized by nearly all participants as being especially prevalent after treatment. As participants stated, “everybody’s worried about recurrence” [P13 Health care provider], “the fear of recurrence is huge” [P2 Decision-maker], and “I just kind of feel like we’re waiting for it to come back” [P29 Caregiver]. Participants discussed greater fear in the time period approaching follow-up tests and investigations, and subsequently awaiting results. As one participant explained:The stress of, the anxiety of what normally occurs in the two weeks or so before your appointment, you know, when you’re wondering what the results are going to be, was probably doing more harm to me than anything that they could help me with in terms of the visits. You dream of the day when you’re no longer getting those tests because they are very stressful. You know, the week or so before the test, like you’re so hyper aware of every single symptom.[P7 Survivor]Participants also discussed how age can influence one’s level of fear of recurrence, with older adults sometimes less impacted by the fear even when it is present. As one participant said:The only emotional thing, I guess, is, you know, in the back your brain is ‘has the cancer been wiped out because of the chemo or is it going to come back? When is it going to come back, if it comes back?’ But that’s tempered by the fact that I’m 75 years old. And if anything, this process has done is it’s made me come to grips with the fact that life is a certain period of time and it will end. I guess the conflict in your brain is when and how?[P24 Survivor]Finally, all participants discussed the need to address the high anxiety that most survivors experience in the post-treatment period. Anxiety was commonly discussed in relation to a number of activities and events that occurred after completion of primary treatment. The first was the sudden reduction in visits that occurred once treatment has ended, leading many survivors to feel that their “safety net” had been taken from them and that their care might “fall through the cracks.” One participant put it this way:You know, take a breast cancer patient, for example. Radiation could be at the end of their treatment. And so they’re coming every day for say a number of weeks. And then all of a sudden treatment ends. And so they often will report losing that sort of safety net that they had.[P33 Decision-maker]The second event that participants discussed as triggering anxiety was discharge from the cancer center back to community-based care. As one participant put it, “There’s a lot of fear. They feel that they’re very well cared for when in the clinic, in the cancer system, but then once they’re discharged, they feel left to themselves. And it’s quite frightening for them”.[P2 Decision-maker]Despite a wide range of physical needs depending on cancer type and treatment, three physical outcomes were described across stakeholder groups as particularly important to address: fatigue, cognitive impairment (“chemo brain” or “brain fog”), and sexual health. Both fatigue and cognitive impairment were commonly discussed across all stakeholder groups as being highly prevalent and challenging for survivors to manage after treatment. These ongoing impacts were viewed as important physical concerns that impede survivors’ abilities to reintegrate into life after treatment, particularly returning to work. One participant said, “I would say fatigue is usually always one of the biggest complaints from patients … a lot of it is an emotional and physical sort of fatigue” [P10 Health care provider]. Another discussed her difficulties with cognitive impairment:I referred myself to a psychologist because I had…I really couldn’t read and I couldn’t do more than one thing at a time. And she allowed that sometimes it’s a very short period, sometimes it’s a lifetime of having that kind of confusion—foggy brain or I don’t know what they call it. … It took me years to get my speed up. I learned that, no, I couldn’t do more than one thing at a time. I think we’ve counted seven times I burned carrots because I wasn’t…I was doing something else while I was cooking supper.[P12 Survivor]Sexual health was commonly described as an after effect of a cancer diagnosis or treatment that is prevalent and requires considerable attention. Sexual health concerns ranged from sexual dysfunction to fertility challenges to changes in sexual intimacy and relationships. Participants discussed the latter concerns  as being particularly prevalent in younger cancer survivors. As one participant discussed:If they haven’t already been thinking about or talking about sexuality and intimacy, then as they move into that beyond treatment phase, trying to kind of get their feet under them again and figure out their new normal, that starts to surface more so. And then I hear more about, you know, how do I, in my relationship, move to a different level? I’m, you know, still sore. My husband is ready to move on. I’m not there yet. How do I manage that? Or, because I’ve worked with people dealing with breast cancer, and certainly some of them had a significant body image change, you know, we’ll talk about some of the challenge of getting comfortable with their own body again and comfortable enough that they’re comfortable with their partner seeing them that way. … and for some, the whole dating scene can be a challenge.[P45 Health care provider]Participants discussed two outcomes of particular importance in terms of practical and economic sequalae after treatment: return to work and financial burden. Regarding the former, many participants discussed how physical challenges such as fatigue and cognitive impairment make it especially difficult for survivors to return to work. As one caregiver noted:Her return to work was like, a little bit difficult because she has this chemo brain or whatever that they refer to it. And she finds that frustrating at times because simple things that you just take for granted after doing them a hundred times, all of a sudden like you can’t remember it or remember how to do it. It’s just, like, it’s gone.[P23 Caregiver]They also discussed how return to work is intertwined with returning to life after treatment, and connected to both a return to normalcy as well as financial stability. As stated by one participant:There’s the new normal concerns. What’s my life going to be like? When am I going to get to do my normal activities? Will I be able to go back to work? And, of course, there’s the socioeconomic ones around if I can’t go back to work, how am I going to have money to pay my bills?[P3 Decision-maker]Participants frequently discussed financial burden due to a cancer diagnosis. This was sometimes linked to concerns about employment. It was also discussed in relation to rural/urban differences in access to care whereby patients in rural areas often incur more out-of-pocket costs for cancer treatment as well as needed support after treatment. One participant said:Some of these people, especially up north, are travelling for days to get to an appointment, and staying overnight in a hotel. And, you know, there’s usually a family or caregiver with them. You know, that’s a lot of time and money and energy for maybe a 10 minute appointment to hear that you’re doing great.[P14 Decision-maker]Many survivors and caregivers noted that these economic concerns were lower if the patient was older and retired at the time of their cancer diagnosis. As one survivor said, “So the cancer never held me back in terms of career and money. Financially, it was never a burden, which I know is for somebody caught in the middle of their career” [P12 Survivor].Participants described two outcomes they deemed relevant with respect to information provision: knowing what to expect and informational continuity. All participants discussed the importance of knowing what to expect in the survivorship period to optimize health and overall well-being. This included knowing one’s surveillance schedule, knowing what signs and symptoms may indicate recurrence, knowing what long-term and late effects might happen and how to mitigate these, knowing about available resources and services, and knowing that life after cancer may not return to a pre-cancer normal. As stated by one participant, “I think the biggest issue for patients is really a lot of that uncertainty of what to expect. When are things going to go back to normal for them?” [P33 Decision-maker]. Knowing what to expect was also a particular concern of caregivers, who want this information to best support their loved one:She would leave the room and I would go in and ask kind of like my questions. I felt like the communication kind of broke down after [treatment]. So there was really a lack of information for me as a caregiver as kind of like what are the next steps as far as like, you know, your cancer treatments are done.[P29 Caregiver]Informational continuity and ensuring consistent, clear information across all members of the care team  was also seen as a critical outcome in survivorship care. As stated by one participant:I think it boils down to making sure that everyone’s on the same page. So patients, primary care providers, and the cancer specialists are on the same page in terms of what to look out for, what follow-up needs to be done, what tests need to be done, who’s in charge? And I think that’s really the most important piece of it … I think the most important piece is that information gets relayed to the right people.[P15 Health care provider]Participants described many system issues and discussed three outcomes in particular that they deemed relevant with respect to survivorship: access to care, coordination of care, and use of existing clinical practice guidelines/evidence-based practices, supports, and services. Participants discussed substantial differences in access to rehabilitation and supportive care specialists and services based on where a person resides . One participant described their barriers with access to care, “And with the dynamics of Saskatchewan … I mean we have a lot of barriers that people from up north face with language and travel for treatment. So, I mean I traveled two and a half hours [to receive care]” [P4 Survivor].Related to access to care, participants also noted differences in one’s ability to access needed services and support based on one’s ability to pay out-of-pocket. Many survivors and families do not have financial means to access services that they require during survivorship because these services exist outside of hospital settings. One participant said, “Like I guess…I don’t know if it’s just the way it’s run or just lack of finances. But you know, there’s a lot of things I think you have to look outside the actual hospital or the clinic for” [P23 Caregiver]. Others discussed a reduced ability to access services such as physiotherapy, prosthetic care, sexual health supports, and other supportive care services due to financial constraints.Participants also discussed coordination of care—both coordination of information as well as responsibility—and the importance of designing and implementing interventions that improve coordination across oncology and primary care. Coordination of care was seen as particularly germane to people with more complex care issues such as older adults with multimorbidity, who see multiple specialists for their health care. Many family/friend caregivers expressed their experience, for example, that there was a lack of information transfer and role clarity across their loved one’s care providers. As one participant described, “We do a lot of sharing information ourselves, and reports and that, with our family physician as opposed to it coming directly from the specialist” [P44 Caregiver]. Another said:There was a lapse between that and kind of follow-up or regular appointments with her GP. So, she was tapped in with her oncologist but didn’t see her GP for probably two years. And it turned out that she had some kind of heart condition that slipped through the cracks.[P42 Caregiver]Both decision-maker and health care provider participants emphasized the need to investigate the use of evidence-based practices, support, and services. This stemmed from the fact that they were keenly aware of, and described, wide variation in follow-up care practices as well as in access to services and supports  needed during follow-up care. While they recognized that guidelines for follow-up care exist, most discussed a lack of adherence to guideline recommendations across settings. In fact, many participants discussed the need to monitor practices as a way of improving the quality of follow-up care provided:We have best care, best practices, in terms of models of care. So, they’re a broad set of recommendations. And we ask the regions to do a self-assessment…against those recommendations to see how they’re doing with respect to different aspects of providing follow-up care. And then at the beginning of the year and at the end of the year, what they did. And based on that, that’s kind of how we incentivize moving towards best practice for the cancer programs.[P14 Decision-maker]This study aimed to identify a suite of stakeholder-relevant outcomes to be incorporated in future follow-up care studies. To do so, various stakeholders across Canada were asked to identify the outcomes they felt were most important in the follow-up care period. Thirteen outcomes were identified across stakeholder groups as being particularly important; these intersect across multiple care domains and at the system level. Several outcomes such as sexual health, financial burden, access to care, and coordination of care were perceived as being particularly relevant to some subgroups more than others. Together, this suite provides a short list of outcomes that should be studied in future research on cancer survivorship care.Cancer survivors experience a wide range of physical, emotional, and economic needs after cancer treatment. A national, population-based survey study in Canada demonstrated that nearly nine in 10 cancer survivors had ongoing physical needs, nearly eight in 10 had ongoing emotional needs, and four in 10 had ongoing practical needs in the 1–3 year period after completing cancer treatment . The mosThis study was undertaken with the aim of informing future research, specifically the selection of relevant outcomes, in cancer survivorship. It is important to note that some of the outcomes identified may be easier to assess than others. For example, validated patient-reported instruments exist to assess cancer-related fatigue and fear of cancer recurrence such as the Functional Assessment of Chronic Illness Therapy Fatigue Scale (FACIT-F) ,25 and CNotably, for a number of the outcomes identified in this study, evidence-based interventions already exist to address the relevant need. For example, RCTs have demonstrated that both physical activity and psychological interventions reduce fatigue in cancer survivors ,32,33. SWhile this study sought to inform future research in cancer survivorship in a practical way, the findings also reflect the shift to more person-centered care and have implications around the use of patient-reported outcome measures (PROMS) and patient-reported experience measures (PREMS) in cancer survivorship care. Indeed, all of the outcomes in the psychosocial, physical, economic, and informational domains should be assessed from the patient perspective, though some may be more challenging to assess than others, as noted above. Notably, nine of 10 Canadian provinces have implemented some level of PROM/PREM reporting, using the Edmonton Symptom Assessment System-revised (ESAS-r) . HoweverThis study has a number of limitations. First, asking participants about ideal or preferred outcomes during follow-up care, without a specific intervention in mind, is somewhat of an abstract request. Thus, participants in this study often had to tie this task to their personal or professional needs and experiences to answer in a more concrete sense. Another study design may have provided a broader range of, or different, relevant outcomes. At the same time, we included a wide range of stakeholders  from across Canada, who had experience with a range of cancer types and subpopulations. Thus, these outcomes represent common needs/concerns experienced across cancer types and subpopulations, and should provide clear direction for researchers in terms of outcomes they should address in future research aimed at improving the survivors’ experiences and outcomes. Second, this study was undertaken in Canada only, and therefore the relevant outcomes may not be representative of jurisdictions whose health care systems differ substantially from Canada. However, patient-level outcomes such as fatigue, cognitive impairment, and fear of recurrence are unlikely to differ substantively across jurisdictions, as evidenced by a recent work in both Australia and the United States ,40. The This study identified 13 outcomes that the stakeholders viewed as important to address in future research on post-treatment follow-up care. These outcomes were identified across stakeholder groups and jurisdictions, and should inform future research in this area. This includes both future trials of new and existing interventions as well as the evaluation of programs in cancer survivorship care. Future research should also identify and examine categories of survivors  to identify what is most important to survivors in these different categories . This wo


Mental Health in the Metropolis (1962), the first major output of the Midtown Manhattan Study, a large-scale, interdisciplinary project that surveyed the mental health of 1660 white Upper East Side residents between the ages of 20 and 59. One of the most significant social psychiatry projects to emerge following the Second World War, the Midtown Manhattan Study endeavored to “test the general hypothesis that biosocial and sociocultural factors leave imprints on mental health which are discernible when viewed from the panoramic perspective provided by a large population.” Despite initial media and academic interest, however, the Midtown Manhattan Study’s findings were soon forgotten, as American psychiatry turned its focus to individual—rather than population—psychopathology, and turned to the brain—rather than the environment—for explanations. Relying on archival sources, contemporary medical and social scientific literature, and oral history interviews, this article explains why the Midtown Manhattan Study failed to become more influential, concluding that its emphasis on the role of social isolation and poverty in mental illness should be taken more seriously today.In the spring of 1962, a series of alarming headlines greeted American newspaper readers. From “New York Living for Nuts Only” and “One in Five Here Mentally Fit” to “Scratch a New Yorker, and What Do You Find?” and “City Gets Mental Test, Results are Real Crazy,” the stories highlighted the shocking and, to some, incredible statistics that fewer than one in five (18.5%) Manhattanites had good mental health. Approximately a quarter of them had such bad mental health that they were effectively incapacitated, often unable to work or function socially. The headlines were gleaned from  In April 1962, alarming headlines flashed across US newspapers about mental illness in New York City. Entitled “New York Living for Nuts Only” and “Scratch a New Yorker, and What Do You Find?” the stories highlighted the shocking figure that 81.5% of Manhattanites had “‘mild, moderate, or impairing’ symptoms of mental disturbance” . Twenty-five percent were effectively incapacitated, often unable to work or function socially.Mental Health in the Metropolis: The Midtown Manhattan Study (MHM), the first volume in the Thomas A. C. Rennie Series in Social Psychiatry. The Midtown Manhattan Study (Midtown) was a large-scale, interdisciplinary project that ran from 1952 to 1960 and investigated the relationship between socio-cultural factors and mental health in the Upper East Side of Manhattan. It was founded and initially directed by Cornell social psychiatrist Thomas A. C. Rennie (1904–1956) and funded by grants from the National Institute for Mental Health (NIMH), the Millbank Memorial Fund, the Rockefeller Foundation, the Grant Foundation, the Corporation Trust, the Lucius N. Littauer Foundation, and the Samuel Rubin Foundation.These stories were spurred by International Journal of Social Psychiatry in Midtown was emblematic of social psychiatry, an approach to mental health that became highly influential after WWII. Although it has been associated with community mental health . It 1987, Age of Melancholy , Professor of Sociology and Psychiatry at SUNY Medical Center; Thomas S. Langner, Assistant Professor of Sociology (Psychiatry) at Cornell; Stanley T. Michael, Research Associate in Psychiatry at Columbia; Marvin K. Opler (1914–1981), Professor of Social Psychiatry at the University of Buffalo School of Medicine (previously at Cornell); and Leighton, Professor of Sociology and Anthropology at Cornell and head of the Cornell Program in Social Psychiatry. The core team was also supported by psychiatric social workers, clinical psychologists, psychiatrists, and anthropologists Eleanor Leacock (1922–1987) and Vera Rubin (1911–1985), who worked on the project from 1952–1955 and 1953–1955, respectively.The “keystone” of Midtown was a home interview survey (HES) of 1660 residents of Yorkville, a neighborhood of approximately 175,000 people (in 1954) on Manhattan’s Upper East Side  led by Opler and intended to form the basis of the third Midtown volume , religion, and rural–urban background) were mapped onto these ratings, the researchers could delineate the relationship between these factors and mental health. These approaches were indebted to previous efforts to map SES and other factors, such as heredity, to mental health. Theodore M. Porter has shown how statistics pertaining to asylum patients from a range of countries dating to the early nineteenth century helped to associate a link between mental disorder and heredity . AssociaUltimately, the key finding of Midtown was that SES heavily influenced mental health: “Offspring of low SES-origin families at all age levels reflect maximum vulnerability to mental morbidity and minimum fulfillment of wellness” . Both women would go onto prominence in their field. Leacock became well known as a Marxist-feminist cultural anthropologist and would eventually chair the CUNY’s anthropology department. She was made EFO Assistant Director in 1952.As an anthropologist I hope we can make good use of an opportunity, developed in medical science, to benefit human beings. Being also, like you, in the same profession and biological species, I will appreciate any attempts to reach consensus .We all face large tasks … and probably some difficulties in accomplishing goals of research. With efficient and mature judgment, and a modicum of trust and considered exchange of opinion, we can also have some real success in research. This appeal was not successful. Rubin and Leacock responded with their own memo, which has not been preserved in the archives, but, according to Opler, took the form of an ultimatum.one Director of the Study” and “one in charge and supervision [sic] of all anthropology work” . Rennie followed up on October 4, 1954, clarifying the project’s line management . Soon, however, the situation was deteriorating again. Opler told Rennie that, while he had “solved admirably a then-current crisis carried to some lengths by two of my colleagues [Rubin and Leacock],” it had led to “more work, less accomplished, and continual clash, with many of his colleagues “acting out” in meetings . Those “acting out” included Srole, foreshadowing disputes to come.The conflict ignited after Opler sent out a memo to all anthropology staff on September 24, 1954, whereby he set out five “rules… made effective here and now” to ensure that the next phase of field work “be productive and efficient, and that professional ethics, manners and careers be preserved and promoted to best effect in the future.” . Opler concluded:The situation worsened. In January 1955, Opler explained that he had taken up Rennie’s suggestion to “effect rapport” with Leacock, asking her “at her desk and with warmth and concern if we could discuss any matters she might have on her mind.” Leacock did not respond positively and, when he tried again later, she left the office “with something of a tirade including, ‘I don’t see that I have anything to discuss with you.’” Opler was convinced that Rubin and Leacock “had attempted, in effect, a serious and self-interested ‘strike’ against research,” “had damaged morale,” and “had gone into high gear to tear a carefully built structure down.” The team was at an impasse, leaving Opler to conclude that “Old Humpty Dumpty cannot be put back together again after 4 months of irresponsible functioning.”Rubin and Leacock further demanded that the anthropology projects be split into two, independent studies with separate teams and publications. For Opler, this was anathema. He was adamant that Midtown had to be conducted as one coherent project, and that its findings had to be articulated with one voice, as was Rennie’s vision. If this was proving difficult among a team of anthropologists, it did not bode well for the interdisciplinary collaborations to come. Opler wrote again to Rennie on February 18, 1955, stating that he was “embarrassed by the fact that both [Rubin and Leacock] are anthropologists,” calling them as “hostile” and “unethical.” . Later he would apologize to Rennie for recommending Rubin and Leacock, describing them as “basically hostile individuals,” who were “shallow and self-interested,” and ultimately suggesting that they be fired .The records do not show, however, whether Rubin and Leacock were fired or whether they left voluntarily after the completion of the EFO in June 1955. What they do indicate is how large-scale social psychiatry projects, such as Midtown, were not only idealistic attempts to determine the causes of mental illness and take steps to prevent them. They were also opportunities for “empire building, control of others, and STATUS” . Putting career ambitions aside, however, the conflict highlighted divisions about how cohesive social psychiatry projects should be. While Rennie and Opler insisted that the integration of Midtown’s various parts was essential, others were less convinced.Opler’s stubbornness about Rennie’s vision was related to his devotion to Rennie himself, who had effectively saved his career. Opler had graduated with a PhD from Columbia in 1938, having conducted research on the Ute and Paiute tribes in Colorado and Utah under the supervision of pioneering anthropologist and folklorist Ruth Benedict (1887–1948). Opler would find a position that year at Reed College in Oregon, where he became interested in psychiatry. In 1943, however, he was appointed to the War Labor Board. According to historian David H. Price , the FBIAfter the war, Opler was awarded a Fulbright to do research in Burma and was offered an endowed chair at Harvard. Then, disaster struck. First, the funding for the Harvard position evaporated and then the FBI told Opler that he would not be able to get a visa for Burma unless he spied for them. Refusing, Opler found himself unemployed. After taking on some temporary positions Opler relied on his prior experience researching patients at Morningside Hospital in Oregon, and began applying for positions in academic psychiatry Opler . He wrotMHM’s foreword that Rennie’s death was “a loss from which the Midtown Manhattan Project could not fully recover” was truer than most readers realized . Srole’s son, Ira Srole, also described how his father managed to extract some of his family members who had been exiled by the Soviets to Siberia (Srole interview). Back in the USA, Srole worked for the Anti-Defamation League before joining Midtown in 1952 (Srole interview). These experiences shaped Srole—much like Opler—into a forthright, yet sensitive, individual who had the willingness and ability to debate his views vigorously. According to his son—and similarly to Opler—Srole had “a fairly quick temper,” “did not suffer fools gladly,” was “not to be trifled with,” and “was not at all shy about expressing his opinions. If he needed to make waves, well, so be it. He made waves.”There was even more animosity between Opler and Srole. Rennie was generally successful in managing these two strong personalities or, as Lewis Opler stated, he at least “kept everybody from destroying each other.” Leighton was not so successful. Srole and Opler’s mutual antipathy masked similar backgrounds. Both emerged from relatively modest Jewish upbringings to excel academically. Srole’s mother died when he was an infant and he spent time in foster homes prior to his father remarrying, an experience that made him “a very sensitive guy” (Srole interview). Shy and withdrawn during high school, Srole would “force himself out of his shell,” and join the school debating team. After completing undergraduate studies at Harvard, he proceeded straight into doctoral studies at the University of Chicago. After some teaching experiences in New York, Srole became a military psychologist with the US Air Force in 1943, and then the United Nations Relief and Rehabilitation Administration Welfare Director of Landsberg Jewish Displaced Persons Camp. He resigned in 1945 in protest at the poor conditions there. His resignation covered in the The bitterness between Opler and Srole was often expressed in relation to the content and authorship of Midtown’s outputs. The ghost of Rennie loomed large. On March 27, 1957, Leighton attempted to settle the issue, proposing that the project be divided into two teams: one led by Srole (supported by Langner) and focused on completing volumes I and II, and one led by Opler and focused on completing volume III . Although Opler agreed to this division, he warned it might undermine the volumes’ “interdisciplinary strengths” and add to the “divisiveness and partial analysis that I have deplored,” resulting in an “inferior product” that would “fail to deliver the kind of scientific products for which we are responsible,” thus “damaging” the reputations of all concerned, including the deceased Rennie . For Opler, “inferior” meant a project that was a loose conglomeration of related studies, rather than a coherent whole that could inform mental health policy. In a marginal note, Opler reminded Leighton that: “Obviously, I am as concerned in March, 1957, about what my or Rennie’s name is attached to, as I was in June, 1952, or will be in January, 1958.”A few months later, Opler announced that he would be leaving Cornell for the University of Buffalo in May 1958. The debates, however, would continue. One thorny issue concerned the volumes’ authorship, which emerged in June 1960, when Srole and Langner consulted legal advice to change the original publication contract. Writing to McGraw-Hill, Srole argued that Rennie’s death had “changed matters drastically” . Rennie had only written one chapter, Srole contended, and, since he had not edited the volumes, it could not be assumed that he “would have accepted responsibility for the whole structure of assumptions, formulations, interpretations, and hypotheses that each volume has erected.” He proposed that, while the series be named in Rennie’s honor, Rennie should not be listed as an author of Volumes II–III, and that Opler’s name should not be listed for Volume I.Opler mulled over his response in a letter to his elder brother, the anthropologist Morris Opler (1907–1996). Although he was outraged, he could not afford a legal battle, and asked his brother for his advice “before plunging” . He also corresponded with Rennie’s brother concerning the matter. Correspondence between the various parties, would continue until November, 1960, when authorship was finally agreed: Opler’s name would be added to Volume I, but Rennie’s name would not appear on Volumes II–III.14Life Stress and Mental Health, was originally meant to be authored by Srole, Langner, and Michael, but Srole’s name was not ultimately listed . In a 1967 interview, Srole described how “only selected investigators have the personality for multidisciplinary research” . Such interdisciplinary divisions were exemplified by interventions into the downward spiral of compounded tragedy, wherein those handicapped in personality or social assets from childhood on are trapped as adults at or near the poverty level, there to find themselves enmeshed in a web of burdens that tend to precipitate (or intensify) mental and somatic morbidity; in turn, such precipitations propel the descent deeper into chronic, personality-crushing indigency  and mental health. Evelyn Forget, for instance, found that the minimum income experiment in Dauphin, Manitoba during 1974–1979 (MINCOME) resulted in fewer hospitalizations for mental illness (A version of UBI was recommended in one of the few documents published during the zenith of social psychiatry that articulated a series of clear preventive mental health strategies. In  illness . Researc illness . But manMidtown and other social psychiatric studies found that mental illness was associated with poverty, inequality, social isolation, and community disintegration (Faris and Dunham The increased interest in UBI during the pandemic, as well as the provision of temporary income schemes, might well result in its implementation in the near future somewhere in the world. There are also a growing number of pilots, including some based in the USA, and UBI has been increasingly endorsed by political parties, such as the Green Party, politicians, such as the former Democratic presidential candidate and New York City mayoral candidate Andrew Yang, and even entrepreneurs, such as Twitter founder Jack Dorsey. Nevertheless, there also continues to be significant resistance to the idea. Regardless of whether UBI becomes more of a mainstream policy or not, the point is that now is time to seriously consider the sort of progressive socioeconomic changes that could benefit mental health and prevent mental illness. This article has explained why Midtown failed to achieve more significance than it did, but perhaps if we learn more about its history and that of social psychiatry more generally, it can still influence the development of a truly preventive approach to mental health today.


Objective: The purpose of the study was to understand cervical cancer screening and prevention practices of refugee women in San Diego, California and identify desired components of a cervical cancer screening toolkit.Methods: We conducted a qualitative study utilizing semi-structured focus groups and identified common themes via grounded theory analysis.Results: There were 53 female refugee participants from Sub-Saharan Africa and the Middle East. Over half of all women surveyed expressed a fear of pelvic exams and loss of modesty as barriers to seeking gynecologic care, with nearly 34% avoiding routine pap tests. Of the 18 participants who were asked if they were aware of the Human Papilloma Virus (HPV) vaccination, only one had heard of the vaccine and none had received it for themselves or their children. Over 60% of participants were interested in educational materials surrounding HPV and pap tests.Conclusion: There is a significant lack of knowledge regarding cervical cancer screening and HPV vaccination among refugee women in San Diego, California. Refugee women in this study were interested in multi-modal educational materials as part of a cervical cancer screening toolkit. In resource-rich nations with access to pap tests, a pelvic examination is performed with a speculum and cervical cells are collected to assess cytology and for the presence of HPV.4 In low-income countries where routine screening is limited, there is a significant underestimation of HPV prevalence.5 Cervical cancer screening and HPV vaccination for women migrating from these high-risk areas of the world are of utmost importance.6Globally, rates of cervical cancer are increasing, predominately in low- and middle-income countries.7 This is true even when compared to traditionally underserved communities, including U.S.-born Black women, who have three times the rate of cervical cancer screening relative to African immigrants.8 While we know socioeconomic limitations and cultural barriers can impede access to routine gynecologic care, there are few studies assessing the extent of this disparity for African and Middle Eastern refugee women.9On arrival to the United States, refugees, and African immigrants in particular, are less likely to utilize cervical cancer prevention resources.10 In addition, the ways in which refugees navigate the health care system are more complex than those of immigrants who have not had the defining experience of life in a war-torn community or refugee camp where gynecologic care may have been provided under coercion.11 Over 10,000 refugees were resettled in San Diego between 2014 and 2019 alone, as the county has one of the highest resettlement rates in the nation.12 Participation in preventative health care is impacted by the breadth of their cultural and religious characteristics and experiences, which for these women are often rooted in Christian and Islamic faiths.13–15In focus groups with migrant and refugee women in Boston, women reported avoiding care when asymptomatic and participating in gynecologic examinations and pap tests only when pregnant due, in part, to the perceived threat to their modesty.16 Currently available resources are sparse and designed without considering women who are unable to read in either English or their native language.17–22 The aim of this study is to understand the current cervical cancer screening practices and perceptions of both pap tests and HPV vaccination among refugees in San Diego, California, and to identify desired components of a culturally centered screening education toolkit.In an effort to tackle this issue, the Center for Disease Control and Prevention reviewed various interventions, from faith-based community partnerships and self-collected sampling, to the use of health promoters and educational materials.24 This study was part of a larger project exploring the experiences of refugee women seeking reproductive health care. Eligibility criteria included self-identifying as a refugee woman of reproductive age, who then agreed to participate in the focus groups. This study was approved by the University of California San Diego Institutional Review Board.This qualitative study was conducted in San Diego, California, with semistructured focus groups. From these focus groups, common themes were identified through grounded theory analysis. Unlike alternative methods of qualitative analysis, such as ethnography or phenomenology, grounded theory provides a systematic approach for the discovery of collective patterns within the data.Participants were recruited by refugee community partners utilizing flyers translated in their respective languages, telephone communications, and in-person discussions. Community leaders associated with the United Women of East Africa Support Team (UWEAST), which provides resources for refugee women from the Middle East and Sub-Saharan Africa, facilitated the outreach to women actively involved in UWEAST events and programs.A total of 6 semistructured focus groups were conducted by interpreters recruited through UWEAST, with 6 to 12 participants per 2-h session. The focus groups were completed between February 2019 and March 2020. Participants were unique to each group and were compensated with $50 dollar gift cards. An interview guide was utilized to assist in conversation  A1. Audi25Using these transcripts and a grounded theory approach, two coders generated a mutually agreed upon set of themes from which a framework was then developed to facilitate coding the transcripts . DedooseA total of 53 women participated in this study. Participants were from Sudan, Somalia, Kenya, Ethiopia, Eritrea, Congo, Uganda, Syria, Iraq, Egypt, and Morocco. Women ranged in age from 20 to 50 years . Across Of the 18 women asked specifically about the HPV vaccine, 17 did not know there was an immunization for the prevention of cervical cancer. In addition, all 18 reported that neither they nor their children had received the HPV vaccination. There was also a perception that vaccination was only for females, evidenced by a participant who stated, “You're saying cervical cancer, but how does that have to do with boys.” Despite this lack of exposure, participants expressed interest, as one stated, “All I need you to do is talk to me about it” and another, “I will have to go get the vaccine.” Past experiences with side effects following vaccination upon arrival in the United States deterred some participants from seeking out any future vaccination.When women were asked to expound on their understanding of cervical cancer, 55% of participants were not aware of it before the focus group and some perceived it to be a new threat they had not encountered in their native country. One participant stated, “People have more fear about [cervical] cancer because it's something new…it's kind of a little bit shock,” which was a sentiment shared by another, “Back home I have never heard of someone who has [cervical] cancer” and another stated, “So common in America people are getting a lot of different cancer.” Women voiced a variety of suspected causes of cervical cancer, as one woman described aspects of life in America putting her at risk, “Sometimes we can't trust the food, medicine…even the equipment the doctors use.” Multiple participants referenced cancer as a potential side effect of birth control, as one stated, “A lot of times women…they're afraid of side effect like cancer” and another mentioned her sister's concerns, “She believes that if she take birth control, you'll bring cancer.”Across multiple focus groups, women conveyed negative associations with pelvic examinations and pap tests, with 35% reporting an avoidance of pelvic examinations primarily due to fear. As one woman stated, “I prefer not to go for pap smear” and another, “When the doctor say that on that day you're going to have a pap smear, I was so terrified. I don't like it.” The sentiments of multiple participants were summarized by an interpreter who relayed, “in their culture or in their country, they don't do it. It's culture for them to not do it. So here they refuse to do it” and, “the reason they don't like it, the pap smear, they are shy to open the legs or put the things, the pain, the pressure.” Many participants expressed a fear of metal speculums causing local trauma, pain, or pressure with insertion, as one recounted, “When I saw the material with metal, I was scared and my heart started beating loud” and another in reference to the lack of previous exposure to speculums, “When I was in Egypt, they touch the woman with hands. She doesn't feel anything and she's quiet.” There was also uncertainty regarding the interpretation of pap test results which was detailed as a limiting factor to testing, “One time I did, and they tell me… they pretend I have cancer.” Despite this fear and confusion associated with pap tests, multiple participants reported a willingness to engage in screening at the request of their physician and with encouragement of family and friends.The fear and discomfort with physical exposure was a stronger core value than participating in gynecologic care for many participants as 45% reported avoiding care due to this concern. This was a consistent theme across multiple focus groups, as one woman highlighted, “I don't feel comfortable with that…I cannot open my legs,” another recounted her experience, “…just scared to open my legs” and another questioned, “…why should I have to go? To open my private parts?.”Some Muslim women recalled feeling as though their physician was fearful or reticent in their interactions because of their religious garb. Referring to doctors, one participant stated, “They see us as ‘You Muslim, you covered’ and they scared…they scared to understand you to ask you more questions. Sometimes they try to shake your hand and say, ‘I'm sorry, I'm sorry’.” Traditional gestures of respect such as avoidance of eye contact were misinterpreted by U.S. health care providers to be a lack of engagement in health care conversations. Multiple participants referenced this behavior in particular. One stated, “That eye to eye contact, when we respect people we don't look them like this,” and another reported, “Africa culture, when you talk to someone, especially us, woman, we have to respectful talk to us, we have to put our eyes down” and another stated, “People maybe they might think, like, you bad.”Women described the challenges of having an open dialog with friends and family as a reflection of their cultural norms. One participant stated, “Everybody in Africa are secretive” and another noted, “When we come from Africa, like, there's a lot hidden inside of us, but we can't say it, because of the culture.” One woman stated clearly, “I don't think I comfortable to talk about it or to show our body.” Despite these cultural restraints, some participants expressed their desire for transparency and vulnerability. They did, however, feel that they lacked the tools to do so with their daughters, as one stated, “Sometimes I want tell her something but I don't know how to say” and another reported, “We feel shy we don't talk about it like parents and child like that.”One woman stated, “Absolutely. I would prefer, obviously, someone who is a woman.” In emergency settings, which were perceived to be male dominated, women voiced concerns regarding gynecologic-specific care and reported refusal of high acuity care from male providers. Male physicians were also perceived to be a barrier to pap testing in an outpatient setting. When asked what potential barriers they faced in general, one participant stated, “If there was a male doctor.” Even though participants had a strong preference for female physicians, some reported discomfort discussing gynecologic issues with anyone aside from their husband. In contrast, one participant stated, “It's about hospitality. As long as you smile at them and as long as you're being nice and welcome. They have no problem. Male, female, any race.”Even with the use of interpreters, many participants were concerned about the accuracy of translation, privacy regarding shared health information, and variations in dialects. Across all focus groups 37% reported these limitations impacted their care. Some participants also referenced a desire to have providers from their country of origin, as one woman stated, “So when you see your own people speaking through your own language, you building trust.” Despite this, some reflected on the fact that shared language does not equal shared culture and even with providers fluent in their native language, cultural barriers can limit interactions.Of the 53 participants, 32 statements were made referencing the U.S. health care system's emphasis on preventative health and the ways U.S. health care providers impact access to care. Some participants did not receive or value preventative gynecologic care, including cervical cancer screening on arrival to the United States. Examples of common sentiments regarding pap tests include, “In my country, we don't use it… We don't have those things,” along with, “Pap smear tests or the mammogram or the breast cancer test, um, it's something honestly I felt it's a big deal over here…where I used to live or where I come from, people go when they feel pain” and, “The doctors office called us and said, pap smears. I said, ‘Why should I have to do, why I don't have a problem. Why do I need pap smears?’.” Some participants reported a dearth of screening while in refugee camps, and on arrival to the United States, their initial exposure to pap tests was in pregnancy. “We don't know it. You think about when you done with babies, you done. Don't go to the doctor.” Another woman stated, “I'm not having a baby, I don't have a husband. Why should I go open my private to the doctor?,” with a similar sentiment shared by another, “She cannot imagine any material go inside, only when she gets delivery. After that she doesn't like anything go in.”Many participants reported watching YouTube videos and seeing posts on Facebook and discussing what they learned with their friends. Across multiple focus groups, women reported their children relayed health information they learned in school, “Our kids are like our teachers now.” Physicians were seen as a trustworthy source of information as one stated, “I trust the doctor that if I ask a question, he would sit and explain it to me very well.” After discussing the importance of gynecologic care, one participant expressed her motivation to not only make appointments for her daughters but also for herself as she and the interpreter stated, “I didn't talk about before. Now I know I need to” and “I think we all need to do appointments.”Nearly 75% expressed interest in improved health education materials. Various responses included, “Even though the doctor explains, it would be nice to kind of give them a brochure to talk more information about it so they're able to understand it more,” and another stated, “There are a lot of women who have the same, similar issues, and having a space like this to talk about the problems that they have with feminine health would be good.” For mode of delivery of information requests included, “do it in social media, Facebook and WhatsApp and send for everybody,” “I'm a visual learner, so I think a picture would be nice,” “If you give us pictures it could be helpful” and “video and book.”In this qualitative study of semistructured focus groups with Sub-Saharan African and Middle Eastern refugee women who have resettled in San Diego, California, perceptions and attitudes toward cervical cancer prevention were explored. In addition, desired components of a cervical cancer screening toolkit were determined.Significant findings included a lack of knowledge surrounding the prevalence and cause of cervical cancer, the purpose of pap tests, and interpretation of results. Many women described unfamiliarity with routine health screening in general and only saw the value in gynecologic care when they were feeling unwell or were pregnant. This particular point of view was shaped by experiences living in countries and refugee camps where resources for preventative health measures were not available. The vast majority of women had never heard of the HPV vaccination and denied having had their children vaccinated. There was also confusion regarding the recommendation to vaccinate male children. Linguistic barriers were also an important factor as many of these women require translation services when receiving care and have limited literacy in both English and their native language. This was likely one of the leading reasons participants requested visual aids when discussing ideal methods of providing health education.26–29 In this study, there was substantial fear of pelvic examinations, from the pain associated with speculums to the concern for modesty. Women also detailed a lack of comfort discussing these topics with their family and friends, particularly their daughters, as a result of cultural taboos.While culture and religious beliefs influence their access to all forms of health care, it is particularly salient in the context of gynecologic care.Multiple limitations of this study were identified. While great effort was put into drawing in a diverse group of women, participants were predominately Syrian. The initial focus groups were focused primarily on access to reproductive health care, with only brief discussions of cervical cancer prevention. In an effort to maintain a focus group format and avoid direct interviews or surveys of participants, not every question was asked of every participant, which limited the sample size for specific topics discussed. The transcriptions did not identify participants by country of origin, preventing comparisons between ethnic groups. Finally, recorded statements were not designated in the transcriptions to a specific participant, which may affect the quantitative summaries provided. However, to mitigate this, multiple statements made by the same participant were grouped as a single response so that the number of individual statements would be equivalent to the number of individual participant responses.Despite these limitations, we found multiple areas of potential intervention, including expanded translation services, language-specific health education materials, and group sessions geared toward pap test and HPV vaccine education.This study examined the cervical cancer prevention practices of refugee women from the Middle East and Sub-Saharan Africa living in San Diego, California. Focus groups revealed shared patterns of avoidance of pap tests due to a fear of pelvic examinations and a concern for modesty and lack of knowledge regarding the HPV vaccine. Participants requested culturally centered health education through print and online platforms. From this pool of knowledge, providers can begin to grasp the extent of the disparity and target future efforts toward a multimodal approach to cervical cancer prevention.


Was ist X? as in Was ist breakfast muesli? “What is breakfast muesli?” We further analyzed each code-mixed utterance in terms of priming. Our findings suggest that much of the early code-mixing is based on concrete lexically fixed patterns which are subject to input occurring in immediately prior speech, either the child’s own or that of her caregivers.This article investigates the role of direct input in the code-mixing of three bilingual children aged 2–4 years acquiring English as one language, and either German, Polish, or Finnish as the other. From a usage-based perspective, it is assumed that early children’s utterances are item-based and that they contain many lexically fixed patterns. To account for such patterns, the traceback method has been developed to test the hypothesis that children’s utterances are constructed on the basis of a limited inventory of chunks and frame-and-slot patterns. We apply this method to the code-mixed utterances, suggesting that much of the code-mixing occurs within frame-and-slot patterns, such as  The predominant goal of language acquisition studies is to understand how children acquire language(s) and why they produce certain structures the way they do. Bilingual children are of particular interest to those studying input-output relations: not only is their input spread across more than one language but, most notably, languages in contact almost certainly influence each other.Das ist the next job “This is the next job”), are a salient outcome of language contact. For decades, researchers have analyzed code-mixed utterances in adults as well as children and produced a wealth of possible explanations. Strictly linguistic approaches to mixing are probably best known for their search for universal syntactic constraints on the phenomenon , with a frame placed utterance initially into which a slot filler (X) is inserted , via partially schematic or frame-and-slot patterns (I want X), to fully schematic schemas (Pronoun VP NP). Frame-and-slot patterns are a vital link on a continuum of schematicity. Children learn multi-word units which subsequently become analyzed as frame-and-slot patterns, creating open slots. By definition, this means that the construction becomes productive; the growing number of its different instantiations may finally give rise to the ultimate schematization: the abstract grammatical pattern.Over the years, an increasing number of researchers have challenged the concept of the “poverty of stimulus” and claimed that children are able to extract linguistic knowledge from the input through learning mechanisms which are responsible for most other types of learning see . The UB traceback method has proven to be a very reliable operationalization . The method starts from the assumption that children’s linguistic output can be attributed to a limited number of patterns which are reused with different slot fillers and thus contribute to the increasing productivity and creativity. Consequently, this method is a purely data driven, bottom-up approach which only identifies patterns if the children uttered them before, reflecting the piecemeal acquisition by relying on general cognitive learning mechanisms such as pattern finding, imitation, and the entrenchment of frequently encountered patterns  e.g., . Input dIt remains to be seen whether these results also hold for bilingual children. There is, however, substantial evidence that acquisition in early bilingualism is driven both by the quantity and quality of linguistic experience in children’s two languages , it gives rise to the occurrence of “me do” errors in the children’s speech. In another study, Want to VP and Want X constructions was influenced by the occurrence or absence of the respective construction in the immediate discourse.Apart from the general assumption that children can learn language from their input, direct discourse situations also have an immediate effect on children’s productions. Since immediate discourse has a direct influence on production, we want to extend this idea to code-mixing to investigate if discourse effects also play a role in the production of code-mixed utterances.the alternative use by bilinguals of two or more languages in the same conversation” (Wo ist paper “Where is paper”). It is a salient phenomenon that can be observed in language contact situations, including bilingual first language acquisition and as such, has been the subject of considerable research effort. Initial CM research was largely focused on sociolinguistic and pragmatic domains following research questions such as why people engage in multilingual language use. Linguistically oriented studies, however, often tackled the issue of what the underlying structures and rules are that govern CM (an early landmark was Code-mixing (CM) is most broadly defined as “rsation” , p. 7, iKomm her police sheep “Come here police sheep” can be analyzed as a frame-and-slot pattern Komm her X into which the lexical item police sheep is inserted. But open slots can be filled with more than just lexical items, as in the case of Wir müssen this löschen “We have to extinguish this” which contains a frame Wir müssen X “We have to X” and an open slot this löschen “extinguish this.” In such studies, the aforementioned traceback method has also been applied to the investigation of code-mixed utterances in bilingual children showing that bilingual utterances are also constructed around frame-and-slot patterns which had been used before and show a high degree of formulaic nature , such as Und this “And this” which the child constantly reused in this form. Not only did monolingual acquisition studies show that children’s early utterances can be accounted for by a limited number of recurring patterns and frames, but mixed utterances can also demonstrate the key relevance of lexically fixed patterns and frame-and-slot patterns. The authors further showed that many of the attested patterns could be traced back to the direct input providing evidence that children can extract linguistic knowledge from the input  strategy when speaking to the child. Fion’s data covered a span from 2.3 to 3.11, however, for the present analysis we only used the recordings at the ages of 2.3, 3.0, and 3.11 . The corpus is a highly dense corpus which means recordings took place 3–5 times per week for 1 h. The recordings took place in a bilingual context with both parents being present. Hence, it was not possible to ascertain what type of context was most conducive to CM. Since Fion lived in Germany and went to a German kindergarten his input is mainly German. Fion’s acquisition of slot and frame schemas is further discussed elsewhere in literature, for example in relation to how his CM patterns reflect the conditions of his changing input . In total, there are 30 recordings available: 10 with Sadie being addressed in Polish by her mother, 10 with Sadie being addressed in English by her father, and 10 with the child being spoken to in Polish by her mother, and English by her father. Sadie produced the most mixed utterances when addressed in Polish (n = 142), and the least when addressed in English (n = 20). Sadie’s acquisition of slot and frame schemas is also discussed elsewhere in literature, for example showing links between the segmentation of constructions and switch placement .The third child is Eetu, who initially grew up with Finnish only, but from the age of 2.2 an English-speaking live-in au-pair looked after him throughout the day. She addressed Eetu in English for the most part and thus, he was exposed to English most of the day. Eetu is dominant in Finnish and except for the au-pair, had no other source of English. The recordings took place in a bilingual context at rather infrequent intervals. This made it impossible to determine what type of context might trigger the most code-mixing. The data used in this study covered a span from 2.9 to 2.11  so that we were able to compare the MLUs of the monolingual as well as CMed utterances.In our main analysis, we followed (a)Daj me that “Give me that” (from Sadie).Completely lexically fixed which renders a chunk, e.g., (b)Das ist + the next job as in Das ist the next job “This is the next job” (from Fion).A combination of two chunks, e.g., (c)And this is X as in And this is tässä “And this is here” (from Eetu).A frame-and-slot pattern, e.g., (d)Echt cars “Real cars” (from Fion).Other, e.g., traceback method which traces utterances or parts of utterances back to previous utterances in the corpus. A chunk is only identified as a chunk if it can be related back verbatim to at least one previous utterance in the recordings. If the traceback only yields a partial match, a partially schematic utterance is instantiated (example c). Utterances which contain a creative combination of two chunks are coded as chunk + chunk (example b). All utterances which do not contain a recurring part are coded as other (example d).In order to account for chunks and partially schematic units, we used the Was ist breakfast muesli?) which was partly primed, in this case by the father. Fion’s CM consists of a frame Was ist X “What is X” and an open slot X filled with breakfast muesli. In this specific example, the open slot X was primed by the father breakfast muesli which Fion picked up in his code-mixed utterance Was ist breakfast muesli? “What is breakfast muesli?”In our second analysis, we were interested in whether parts of the code-mixed utterance are influenced by the discourse (priming). To determine this, we examined 20 utterances prior to the child’s turn (including child and caregiver utterances) . If primOur first analysis was concerned with the length of the different utterance types . The MLUWe also analyzed the MLU for the code-mixed utterances and this showed an interesting picture. For each child we observed that the code-mixed utterances were longer than the monolingual utterances, even in comparison to each child’s more proficient language.2 test and showed that most of the time children’s CM is constructed around lexically fixed patterns, either as a complete chunk or as a partially schematic utterance . For example, Eetu used a frame in the mixed frame-and-slot pattern: It is X as in It is sinistä kakkua “It is blue cake.” Likewise, Fion produced a bilingual utterance Die sind for daddy “These are for daddy” which contains two chunks, Die sind and for daddy. We also found instances of chunks which are bilingual, such as Sadie’s English-Polish chunk at the age of 2.2 And to “And this.” However, it also has to be noted that the children show individual differences in their use of chunks and patterns. For example, Eetu and Sadie used more chunks in their CM which could be due to their dominance in one of their languages , or the amounts of data we have for each child. Looking at the language  of the chunks/frames, we see that in Fion’s case 50% of the frames were realized in German, whereas Sadie and Eetu used overwhelmingly English in their frames (83 and 66%). Despite their different profiles and dominance levels, all children rely considerably on lexically fixed items in their mixed utterances  and examined if the complete code-mixed utterance, or parts of the utterance, had occurred in the previous 20 utterances  = 35.4042, p = 0.05].In our second analysis, we were interested in how far prior speech influences the production of the mixed utterance. We used all bilingual utterances from our first analyses for which we could identify a chunk or frame-and-slot pattern  = 30.91, p = 0.001]. Interestingly, even for complete bilingual chunks we see that children pick up their own realizations and prime themselves. For example, Fion continuously used the bilingual chunk Und this “And this” which he had not encountered in the discourse but which had become temporarily entrenched through his own practice. For chunk + chunk combinations, we see a slightly different picture. Whereas Fion’s chunk + chunk combinations were often primed completely, Sadie and Eetu did not show a specific pattern . Another interesting picture emerges for the frame-and-slot pattern priming: Fion and Sadie mostly show slot priming but most of Eetu’s frame-and-slot patterns are either not primed, or the first part, the frame, is primed. This shows that also the immediate discourse situation influences the construction of code-mixed utterances.Finally, we also analyzed the source of priming. As such, priming could either happen through the child herself in the form of self-priming, the discourse with the interlocutors, or both child and discourse could provide the prime. First of all, And me go X as in And me go pois “And me go away” (Eetu). However, with the group case study approach adopted in this article, comparisons between the proportions of different construction types are difficult as the children display different language profiles, and we have very different amounts of data for each child. Secondly, we investigated the role of the discourse in the form of priming, showing that very often parts of the mix had been provided by the direct discourse. Thirdly, we investigated the source of the priming, and found that children were primed both by themselves and by their interlocutors.In this study, we analyzed CM from a UB perspective in three bilingual children growing up with different language combinations. In our main analysis, we concentrated on the role which lexically fixed patterns play in CM. Results showed that all three children constructed their mixed utterances around frame-and-slot utterances, such as From a UB perspective, it is assumed that children acquire their languages in a piecemeal fashion by relying on lexically fixed and partially schematic patterns. In order to do so, children use general cognitive learning mechanisms, such as pattern finding or the entrenchment of frequently encountered units . The samConcerning the identification of patterns, the traceback method is a purely data-driven method which detects patterns only if they occurred before. As such, it is a rather conservative method which probably underestimates the number of occurrences as the corpora used in this study only capture a small percentage of the children’s daily speech.Since input and output are inextricably linked to each other, UB accounts assume that children can extract linguistic knowledge from their immediate environment. Therefore, our second analysis was concerned with how much material can be provided for children to use in their CM through prior speech. Our analysis of priming indicates that in the case of each child prior speech plays an important role in the construction of code-mixed utterances. Children often use structures which occur immediately prior to their own turns. In our data, we found that children were primed both by themselves and by their interlocutors.In general, priming lowers the processing burden since patterns and words had been activated before and thus, they are easier to retrieve e.g., . StronglIn all three children studied, output therefore closely follows the input situation, an observation which echoes previous usage-based findings e.g., . PrimingOur study contributes to the understanding of how code-mixed utterances are assembled. In the vast majority of cases, they are put together partly from the elements that the child can access and retrieve from memory, and partly from elements which are reinforced by the immediate discourse. In all cases such elements are independent chunks which are “patched up” together to meet these very young children’s communicative needs.Lastly, while our group case study approach allowed us to capture similarities in the use of CM, any observations made here should be treated with caution. In order to verify how our results hold in larger populations of children, the traceback method needs to be applied more widely, ideally in its automated form to allow simultaneous analyses of several large datasets , and eveThe raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.Ethical review and approval was not required for the study on human participants in accordance with the Local Legislation and Institutional Requirements. Written informed consent to participate in this study was provided by the participants’ legal guardian/next of kin.All authors listed have made a substantial, direct and intellectual contribution to the work, and approved it for publication.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


User-centered design is typically framed around meeting the preferences and needs of populations involved in the design process. However, when designing technology for people with disabilities, in particular dementia, there is also a moral imperative to ensure that human rights of this segment of the population are consciously integrated into the process and respectfully included in the product. We introduce a human rights-based user-centered design process which is informed by the United Nations Convention on the Rights of Persons with Disabilities (CRPD). We conducted two editions of a three-day-long design workshop during which undergraduate students and dementia advocates came together to design technology for people with dementia. This case study demonstrates our novel approach to user-centered design that centers human rights through different stages of the workshop and actively involves people with dementia in the design process. RadnofskyIn User-Centered Design, technologies are typically created around the needs and preferences of participants. Ethics, which extend beyond individual preferences, are typically addressed in the context of seeking institutional review board (IRB) approval. Aside from the IRB process, the work of ensuring that research and resulting technologies do more good than harm is left to the varied ethical sensitivities of individual researchers .1 and Diana Blackwelder2, joined researchers in teaching students how to weave principles of human rights into their technology designs.We propose an alternative approach, which draws on human rights as a way to recognize moral imperatives in design. The United Nations enshrined these rights in the Convention on the Rights of Persons with Disabilities (CRPD) in 2006, affirming that people with physical, mental, or cognitive disabilities must be provided accommodation and adaptive environments by the state, so they may enjoy the same human rights as everyone else . In this2At the end of WWII, the United Nations (UN) was created, and soon thereafter produced the Universal Declaration of Human Rights, to protect the inalienable rights of world citizens, based on principles of dignity, liberty, equal and fair access to justice, health, education, privacy, freedom of movement, self-expression, and the right to make one’s own choices. In 2006, the UN adopted the CRPD, mandating that people with physical, mental, or cognitive disabilities be provided accommodation and adaptive environments by the state, so that they may enjoy these same human rights. The CRPD is an international treaty based on international law and has been ratified by a majority of the member nations. In 2016, Mary Radnofsky became the first person with the disability of dementia to speak at the UN Conference of States Parties in New York and at the UN Human Rights Council Social Forum in Geneva later that year.Dementia is a condition that involves changes in cognition and abilities, often affecting the ways that individuals engage in daily activities . Dementi3“Universal Usability,” “Universal Design,” and “Design for All” have arisen to ensure that the needs of people with disabilities are met in all technologies, reducing obstacles to access, based on user abilities , 25, 36.People with disabilities are often excluded from design activities and decisions about technology created for them. Building off the “design-for-one” approach, “Designing for User Empowerment”  includes“Value Sensitive Design” seeks to account systematically for “universal concerns of ethical import” in the design process , 20, tho4Below, we describe the four-step design process – setting the stage, gathering and analyzing data, generative design, and evaluation, highlighting where we introduced materials and content related to human rights. We use pseudonyms for students see  and real4.1equality,” “privacy,” “independence,” and “freedom of openly expressing [myself].”Each workshop began with Mary introducing human rights from the perspective of people with dementia. She explained that most technologies are designed for caregivers, or in the absence of input from the person with dementia. For example, medical alert devices, which could be stigmatizing, are now often designed to look like jewelry, rather than a “medical device with a giant red cross.” In 2019, in addition to this overview, Mary prompted students to think about what they wanted in terms of their own basic human rights, generating responses such as “Mary also provided illustrated excerpts see  of the CPost data collection, students shifted to analysis. We taught them affinity diagramming, a process of organizing data into groups and themes . While s4.2“One of the ideas we were discussing regarding the smart mat…balance and falling can be an issue… and we can generate games, or some kind of exercise that is going to help [people with dementia] to keep their balance?” (Maya). Emma redirected their questions, encouraging them to “let the ideas come from the users.” Diana also directed them by pointing out questions which were “too vague” , and encouraged students instead to ask questions that are “relatively general, but at least point me in a direction so that I can get my brain thinking about those things” .We taught students how to conduct qualitative interviews to directly learn from people with dementia about their needs. In 2018, the interviews were fairly brief. In 2019, students were mentored in more in-depth interviewing techniques, and given more time with the two dementia experts, to gather meaningful information. Diana’s group started with an idea related to falls, asking technology-focused questions: 4.3“help you find your phone,” “there are a lot of other things you can lose track of,” such as sunglasses. Mary agreed she could use a technology like this for tracking her keys or her service dog, Benjy, when he was off duty. Once this design opportunity was identified and students sketched “futuristic, off-the-wall, and original ideas,” they created a low-fidelity prototype  and/or digital prototyping tools , and a carpet that warns if “you’re a little bit off-balance” (Aruna). As students were ideating to create these prototypes, some of their sketches revealed how they considered social aspects of the technology. For example, Kira sketched the “Smart Mirror” that would help people apply make-up to correct areas of the face so they could feel confident going out in public. This idea was linked to the human rights theme of decision-making and self-determination that had emerged in affinity diagrams. The prototype for this idea , a context-sensitive conversational agent, like idea see  uses an The other design idea was an assistive robot see  called “4.4We taught students two evaluation methods at the final stage of the design process. The first method was cognitive walkthroughs , in whicad hoc manner, thinking out loud to consider whether their designs took into account each of the human rights. In 2019, we co-created a printed set of human rights-based heuristics  “within reason” and “depending on their capability.” The students decided that their robot should not impede this right but make suggestions through different privacy and autonomy configurations, since each individual with dementia may need different levels of autonomy over their decisions and actions.The heuristic evaluation was done by independent project groups, each of which included a person with dementia, wherein they reflected together on aspects of their designs essential for preserving human rights. For example, Diana’s group discussed how CRPD Article 28 - “the list of things that we have understood, that we should have incorporated into our designs… we should have taken these into account, into the creation of the invention, and the way [the researcher] is asking it, is more of an evaluative aspect.” Diana also pointed out that a violation could raise the question as to whether the technology had created “substandard living [conditions]” for the person with dementia. Based on the heuristic’s different functions, Aruna, Kira, and Mary redesigned their heuristic worksheet by creating two columns, one for “violated” and one for “included,” adding space to explain how to provide a “possible solution.” Although both teams approached this phase differently, they demonstrated greater sensitivity to the rights of people with dementia after applying the human rights heuristics to their projects.The human rights heuristic sparked critical evaluation of the students’ technology designs once participants negotiated a shared understanding of the CRPD Articles. In both 2019 groups, each right was read aloud and interpreted, alternatively by the person with dementia and the students, until they all acknowledged agreement on what it meant. In HCI, heuristics check for violations, that is, whether an interface or system is, in any way, violating a rule of thumb . One stuThe students noted appropriately that not all heuristics were relevant to their projects. For example, Mary’s group felt that CRPD article 25 did not apply to their “Smart Mirror,” which did not involve healthcare. Thus, while the heuristic successfully encouraged groups to reflect on their ideas by designing with a human rights lens, there is a need to continue to investigate how they might best be integrated into and focus on various aspects of the design process, which we further discuss below.5This case study provides a first step towards answering past researchers’ call for practical  and evid5.1Our approach seeks to systematically incorporate human rights into the design process. While existing design methodologies, such as Value-Sensitive Design , design The CRPD-based human rights heuristics were a key component of our approach to evaluating designs. Based on the traditional use of heuristics in HCI, we had originally created the human rights heuristics to check for violations . HoweverWhile we see the potential for using these heuristics, we acknowledge critiques of how rule-based approaches to ethics may not address underlying structural and societal problems .5.2Throughout the workshops, students were taught to incorporate human rights principles as part of the design process rather than passively learn them as an abstract concept. People with dementia, students, and researchers worked together to explore human rights as a necessary part of the design process. Including people with dementia on the team not only gave students immediate access to end-users, but also demonstrated a commitment to the very human rights we were teaching – people with disabilities are equal  members of society, whose needs and rights must be directly addressed.This involvement of people with dementia transcended their role as end-users in the user-centered design process. Mary and Diana played a key leadership role in the workshops, from helping create activities and materials  to setting the tone for the workshop (Mary’s introduction of the CRPD human rights). Mary and Diana were also more than co-designers; they served as teachers, leaders, mentors, and advocates for dementia rights.Given how much the design process benefited from the technology, research, and advocacy experience of participants with dementia, we hope to investigate whether training in research practices might facilitate similar roles for other people with dementia. Yet, we recognize that people with dementia all have particular sets of skills and a lifetime of experiences and can serve many kinds of roles in user-centered design.6Eleanor Roosevelt, the first chair of the UN Commission on Human Rights, declared that human rights “carry no weight unless the People know them, unless the People understand them, unless the People demand that they be lived” . In this