Niemann-Pick disease type C (NPC) is a debilitating condition that impacts patients’ and caregivers’ quality of life (QOL) and reduces the patient’s life expectancy. Since there is little qualitative research from the perspective of patients and family caregivers, this study explored the impact of NPC on patients’ and caregivers’ daily lives to understand the burden of disease.A survey of caregivers for patients with NPC and adult patients with NPC  assessed NPC severity, importance of NPC symptoms, and how symptoms impacted patients’ and caregivers’ activities of daily living (ADLs) and health-related QOL (HRQOL). Follow-up interviews with a subset of survey participants (n = 28) explored the ranking of NPC symptom importance and impact on ADLs and HRQOL. Findings indicated that the most important manifestations of NPC were ambulation, swallowing, speech, fine motor skills, and cognition, which were those that had the most significant impact on ADLs and HRQOL. A wide range of ADLs were affected by NPC, mainly eating/drinking and the ability to perform daily tasks, including self-care, communicating, participating in school or work, and moving indoors as well as outside the home. Along with these impacts, there was an increased risk of experiencing dangerous or life-threatening situations leading to loss of patient independence and additional caregiver burden, often requiring changes in lifestyle such as giving up work. All aspects of patients’ and caregivers’ HRQOL were affected. Participants reported feelings of social isolation, loss of enjoyment in activities (patients), and feelings of sadness or worry (caregivers).Ambulation, swallowing, speech, fine motor skills, and cognition are important manifestations of NPC. ADLs and HRQOL were impaired in the majority of patients as well as their caregivers. The findings were independent of current age, age of onset of symptoms, and level of NPC disease-related disability; however, the impact increased at higher levels of disease disability. Knowing the impact of NPC on patients and caregivers is important for understanding the lived experience of NPC and for identifying potential areas of support. NPC1 (≈  95% of cases) or NPC2 (≈ 5% of cases) genes  pediatric patients and 21 [48.8%] adult patients), and six (12.2%) of the surveys were completed by adult patients reporting for themselves. A subset of 28 survey participants completed the follow-up telephone interview (20 in the US and eight in the UK). Of those interviewed, 23 (82.1%) were caregivers (reporting for 10 [43.5%] pediatric patients and 13 [56.5%] adult patients), and five (17.9%) were adult patients. Of the 43 caregivers completing the survey, 40 were a parent of the patient, one sibling, one grandparent, and one aunt. All caregivers who were interviewed were parents. Besides relation to the patient, no additional demographics about the caregivers were collected in order to focus on the patient and reduce participant burden of completing the survey. Given the low number of adult patients reporting for themselves , the impact of NPC on patients’ ADLs and HRQOL are reported primarily from the point of view of caregivers. Overall, a broad range of current ages, age of onset, and NPC severity were included in both the survey and interview . When comparing those in the least severe to most severe group on the 5-domain NPCCSS , those in the least severe group more frequently ranked ambulation and cognition in their top five of importance . Conversely, those in the more severe group more frequently ranked swallowing in their top five of importance than those in the less severe group (n = 6/6 [100%] vs. n = 3/7 [42.9%]).The greater frequency of swallowing’s importance was also highlighted qualitatively in the interviews when caregivers discussed their reasons for ranking swallowing in their top five of importance. As one caregiver of a 24-year-old male with a 5-domain NPCCSS total score of 15 noted about what the increased risk swallowing difficulties meant, “I’d rather keep him from choking. […] Things that could cause him to die, those are my scary things.” Similarly, the caregiver of a 28-year-old male with a 5-domain NPCCSS score of 23 said, “He’s [at] risk feeding at the moment um, and we have recently had an appointment for uh-uh a PEG feed. […] He’s not had any chest infections yet, but it has deteriorated.”In the web survey, participants reported a variety of symptoms having an impact on the patient’s own ADLs and HRQOL as well as that of the caregiver or other family members as summarized in Table Overall, for each symptom domain, a broad range of impact was reported , suggesting that the individual experience may be quite heterogeneous. However, the majority of participants reported being impacted by NPC to some extent . Even though patients overall were reported in the survey by their caregiver to be at a moderate disease level (mean 5-domain NPCCSS score = 12.0), 71.4% or more reported the patient’s ADLs or HRQOL being impacted at least “somewhat” by each symptom. Similarly, for the six adult patients who reported for themselves and who were at a less severe disease level (mean 5-domain NPCCSS Score = 7.8), 67.7% or more reported their own ADLs or HRQOL as being impacted at least “somewhat” by each symptom.NPC had a considerable impact upon both ADLs and HRQOL of patients and the two, ADLs and HRQOL, were interrelated. In the interviews, caregivers and patients reported NPC symptoms had an impact on several ADLs, such as difficulties with fine motor skills and swallowing impacting patients’ eating or drinking, and having to stop or having difficulties with previous activities, which were most commonly reported, and problems with self-care and personal hygiene as summarized in Fig. These impacts on patients’ ADLs arose from several different symptoms. Difficulty eating or drinking was often reported as a result of the patient’s swallowing difficulties  or difficulties with fine motor skills . Having to give up, or having difficulty continuing, previous activities often resulted from difficulties with fine motor skills  and cognitive difficulties . Difficulties with speech  and cognition  most frequently led to the impact of having difficulty understanding/communicating. Ambulation symptoms often contributed to patients’ having difficulty moving indoors , having difficulty with tasks outside the home , and needing assistance with daily tasks , including self-care activities such as going to the bathroom . Impacts on school or work often stemmed from cognitive difficulties  or difficulties with memory .NPC and the impact it has upon ADLs also has a further effect upon patients’ HRQOL in a number of ways, with considerable impact on all major domains of HRQOL: emotional , physical n = 24; 85.7%), psychological , and social . The most frequently cited  emotional impact on patients from the caregiver perspective was patients feeling frustrated about their disease progression across multiple symptoms including speech, fine motor, and cognition or memory. Regarding the physical well-being aspects of patients’ HRQOL, participants discussed issues directly related to NPC such as the risks of dangerous situations, falling and being less active, but most frequently reported patients being more susceptible to other health concerns, such as weight loss, sleep inversion, or respiratory problems . In terms of social well-being, it was commonly reported that NPC made patients less social overall and more socially isolated because they found it more difficult to travel to visit others or because they had greater difficulty communicating. Example quotes are given in Table .7%, psycNPC not only impacted patients’ ADLs and HRQOL but also that of the caregivers  as summarized in Table How exactly NPC impacted patients and caregivers depended on the degree of disability. When speaking specifically about ambulation, the majority of participants reported that it impacted ADLs or HRQOL at least somewhat Table . ParticiHow NPC impacted a patient’s ability to communicate or understand communication also varied depending on the degree of disability. In those at lower levels of disability (n = 11 with a 5-domain NPCCSS score of less than 10), a typical impact reported was needing to repeat oneself or having difficulty pronouncing words , which was noted by a 51-year-old female patient with a severity score of 5: “I feel like I talk just fine. And if people don’t understand me, they ask me again. I’ll repeat what I said.” However, in those with a higher degree of disability (n = 17 with a 5-domain NPCCSS score of 10 or greater), it was often reported that patients struggled to express their needs or were no longer able to communicate at all with those they were unfamiliar with : “He very rarely verbally communicates. So, um I mean it’s okay for us but if [it’s] somebody from outside [the family], he can’t communicate alone.” .Cognitive impairment led to difficulty at school or work for patients  across all degrees of disability from 5-domain NPCCSS scores of 5 and above. However, for those at higher degrees of disability, cognitive symptoms had a greater impact on patients’ ability to communicate: “And it’s hard to, like, get her attention back on what I’m trying to convey to her.” . Of the four (14.3%) participants who described cognitive symptoms’ impacting patients’ ability to communicate and understand, all had 5-domain NPCCSS scores of 10 or higher.Overall, impacts on patients’ ADLs were generally consistent across age with some exceptions. For instance, impacts on former activities for pediatric patients were often about no longer being able to do “child” things like playing with peers: “You know, we try to let him have fun. […] He’s not as free to do stuff as other kids would be.” . For adults, though, more domestic activities like writing or gardening were impacted: “I do notice when I’m out gardening or doing things like that, you know, my hand, it gets cramped.” .Caregivers of pediatric patients were often more concerned with their ability to keep up with peers or even attend school: “Can I send him to pre-school and he will be able to participate?” . For adults, though, the impact was more about being able to work or maintain work: “I work on a computer. And so many times now I need to, you know, double check what I’ve typed […] because I don’t have the fine motor skills I used to have.” .Daily tasks were also impacted in different ways for pediatric and adult patients. For children, caregivers discussed patients’ basic ADLs like eating and dressing: “So, dressing himself is harder, brushing his teeth is harder, you know, to where he needs assistance with it.” . While for adults, participants also discussed more complex tasks like managing money or finances: “He couldn’t problem solve some of the things that had come up that he previously had no issue with. Whether it be the cash register or, you know, dealing with the finances of the business.” .How NPC impacted patients’ HRQOL also varied by the age of the patient. For instance, older adult patients (≥ 30 years of age) or their caregivers more commonly talked about the psychological impacts of NPC on patients  than younger adult patients 18 to 29 years of age  or pediatric patients under the age of 18 years . These included loss in language skills: “He’s also struggling with his voice now and he can’t remember words and he’s finding it very difficult to talk fluently.” . They also included a change in the patient’s personality: “It impacts personality, you know, [Patient] was always a quiet person, but you know I think he’s always been a happy, outgoing person. Um- and we see that, you know, he’s not quite as much anymore because he has less interpersonal interactions.” (Caregiver of 32-year-old).Patients’ age also impacted how caregivers’ daily activities were affected. For younger patients (29 years or younger), more caregivers expressed the need to alter their own behavior  than caregivers of patients 30 years or older . Conversely, more caregivers of adult patients 18 years or older talked about the patient requiring additional caregiving  than caregivers of pediatric patients under the age of 18 years . Relatedly, needing to guess what patients needed was particularly relevant to caregivers of pediatric patients. All caregivers who expressed this impact in the interview  were caregivers of patients under the age of 18 years.In the interviews, the unique way in which NPC impacted adult patients was a common theme. Caregivers of adults often raised issues of consent and decision making that are more difficult with adult patients than with children: “With young children you make the decisions for your children. With adults that doesn’t happen all the time and you have to make the decisions with them and that’s often difficult.” .Some caregivers also mentioned how patients have more support while they are school age; however, after they finish school there is less support for them in terms of work: “I think also it’s hard coming out of education and there’s kind of nothing. It’s really hard to know what to do with a kid who’s not getting any job opportunities because there’s some difficulties, but still is too able too capable to, to just put into a, care situation, where, you know, they, they wouldn’t be engaged sufficiently.” .The impact of NPC also did not vary considerably according to the age of the patient at symptom onset. When comparing patients whose symptoms started before the age of 15 (n = 20) to those whose symptoms began after this age (n = 8), the most commonly reported impacts on the patients’ ADLs in both groups included it being more difficult to do tasks , and having more difficulty or having to stop former activities . In those whose symptoms started before the age of 15, having difficulty communicating or understanding  and having greater dependence on caregivers  were also commonly reported. For those whose symptoms began after the age of 15 years, impact upon school or work was also commonly reported .Although the general impacts felt were consistent across groups defined by age of symptom onset, precisely how or why patients had more difficulty or had to stop former activities varied. For those whose symptoms began as children, seizures or difficulties with ambulation often impacted their former activities such as playing: “There are a lot of things she used to be able to do […] she used to at least toss the ball or try to push it.” . For those whose symptoms began as adolescents or young adults, it was often fine motor skills having an impact on handwriting that were noted: “She was doing um, an exam she had to either use a computer or somebody that’s doing the typing for her […] because her handwriting is so slow and it’s quite uneven.” .Symptoms relating to ambulation, swallowing, speech, fine motor skills, and cognition were rated as most important by participants, and this rating was consistent across age groups. Difficulties with ambulation and swallowing were highly salient symptoms to the participants interviewed in this study. Results also suggested that at higher levels of NPC severity, swallowing seemed to be more important than symptoms associated with ambulation or cognition. This may be because once patients reach a stage of severity in which they are not moving about independently they have less risk of falls, whereas swallowing and the life-threatening risks associated with that  become the key symptom to manage. This finding of key symptoms, which were common across age groups, age of onset, and by degree of disability, is consistent with previous NPC research studies which also found these were the most important symptoms , 24. It The impacts described by participants centered around mobility, self-care, ability to do previous activities, and emotional impacts such as feelings of anxiety or depression. Mobility issues both in terms of moving around inside and outside the house as well as issues around transportation were often reported by participants. Activities of self-care were often discussed by participants as patients experienced difficulty with personal hygiene activities, often requiring additional caregiving support for these activities. A key impact of NPC reported by participants was patients having difficulty or no longer being able to undertake previous activities and, as a result, experiencing greater social isolation. Furthermore, the emotional impacts of NPC, including feelings of frustration, anxiety, fear, and worry were often reported.As the majority of interview participants were caregivers, the emotional impacts of NPC on patients, such as feelings of frustration, were informed by their interpretation of patients’ behavior. For example, as the caregiver of a 16-year-old male said, “People have trouble understanding him, so it’s frustrating for them, and it’s frustrating for us. Um, I think it’s frustrating for him, but he doesn’t say it’s frustrating for him.” Future research may want to confirm with patients themselves, where possible, that they experience feelings of frustration or similar impacts that are difficult for an observer to know directly.The degree of disease disability according to the 5-domain NPCCSS scores not only reflected the severity of the patient’s NPC but also how the disease impacted daily life. For instance, at lower levels of disability, patients may need to be more mindful when moving around indoors, but they do not necessarily need to make adjustments to their homes. At higher levels of disability, though, patients may need to adjust their home environment to accommodate them. Similarly, at higher levels of disability, activities outside the home and communicating with others were more difficult, possibly leading to greater social isolation. These findings suggest that as the degree of disability progresses, the degree of impact NPC has on patients and caregivers similarly increases.Participants in this survey and follow-up interview study were very engaged and willing to share their experiences, leading to a considerable amount of rich, qualitative data to inform understanding of the patient and caregiver experience of NPC. Findings from this study on the burden of NPC highlight areas that are most salient to patients and caregivers and which should be considered by relevant stakeholders in public health and those who support the community of NPC patients and their caregivers. The impacts NPC can have on mobility and ADLs, both inside and outside the home, and practical challenges such as transportation are of critical importance. This research has also clearly demonstrated that NPC has a dramatic impact upon both the patients and also their caregivers, in terms of ADLs and all aspects of HRQOL , and that support is needed to help individuals in these areas in addition to finding treatments for the symptoms of NPC.There are some limitations of the current study and implications for future research that are important to note. In this study, the study activities were primarily completed by caregivers rather than patients. Given NPC’s impact on fine motor skills, cognition, and speech, many patients were not able to complete the web survey on their own or be interviewed over the telephone. Ethical considerations also limited participants to be either adult patients or caregivers, meaning pediatric patients could not take part in study activities on their own and their experiences of NPC symptoms and impacts could only be captured by proxy report of the caregiver. If greater self-report could be obtained, this would help further confirm that the impacts of NPC raised by caregivers in this study are also what is of most importance to patients themselves. As this study was able to include several patients self-reporting for themselves, whose responses were similar to caregivers, it provides some provisional support that the impacts reported by caregivers are also the impacts of greatest importance to patients themselves.The study originally intended telephone interviews to be approximately 60 min; however, after the initial interviews overran, the interview time was extended to approximately 90 min. Although this may have increased participant burden, those involved were highly engaged and willing to take part in longer interviews. Given the long diagnosis process, the complexity of presentation, and the multitude of ways in which NPC impacts people’s day-to-day lives, even the extended interview time did not enable all aspects of patients’ and caregivers’ experiences to be covered. Future studies should anticipate longer interviews or may want to consider having multiple interviews with patients and caregivers to get a fuller picture of their experiences with NPC and its impacts.NPC profoundly impacts patients’ ADLs and HRQOL in a number of ways. The results confirm that ambulation, swallowing, speech, fine motor skills, and cognition are the most important manifestations. ADLs and HRQOL were impaired in the majority of patients as well as their caregivers, which was independent of current age and age of onset of symptoms. Impacts were also reported across all levels of NPC disease-related disability, although how exactly NPC impacted patients and caregivers varied by the degree of disability, with greater impact at higher levels of disease disability.Knowing the impacts and burden of NPC on patients and caregivers is important for understanding patients’ and caregivers’ lived experience of NPC as well as for revealing the areas of support patients and caregivers need most. This study has begun to increase that understanding, pointing to the needs patients—particularly adult patients—and caregivers have in terms of greater support for providing care, transportation of the patient, more resources for adults with NPC, and emotional and mental health support for both patients and caregivers.Adult (≥ 18 years of age) NPC patients, and caregivers of pediatric (< 18 years of age) or adult patients with NPC, were recruited into the study. The study had two parts: Part 1, a web-based survey; and Part 2, a follow-up telephone interview. A subset of the web-based survey participants took part in the follow-up telephone interview. To ensure the study activities  would be as applicable and sensitive as possible to the lived experience of patients with NPC and their caregivers, two patient advocacy groups (PAGs) provided feedback on the study design, protocol, and associated documents. Both PAGs also invited a caregiver who was a member of their organization to review the content of the web-based survey and interview and provide feedback to improve the clarity of the content, instructions, and questions.In the web-based survey, participants (patients or caregivers) were asked to assess the patient’s NPC disease status, rating the severity of the nine major domains within the NPCCSS , 26. EacParticipants were then asked in the survey to identify and rank the five most important NPC symptoms to them from 1 = “the very most important symptom” to 5 = “the least important symptom.” In this ranking exercise, participants could choose from 9 symptoms listed ; in the UK, it was the Niemann-Pick UK (NPUK). Each PAG advertised the research study to their member community via email blast, a post on the PAG’s website or social media profiles, or personalized emails sent to individual members. Individuals interested in participating then directly contacted the researchers to be granted access to the web-based survey. The survey included electronic informed consent. The aim of the study was to receive 60 completed surveys across the two countries. As part of the survey, participants could express interest in being contacted to take part in the follow-up telephone interview. Those who expressed such interest were contacted on a first come, first served basis to schedule the telephone interview with the aim to collect information from at least half of the survey respondents .


In his recent study, Pokropski argues that Dreyfus's famous (or infamous) cognitivist reading of Husserl's theory of mind is partly misleading, specifically, as a strong computationalism. The strong computationalist reading of Husserl, according to Pokropski , p. 871,clearly differentiated and the former can be developed regardless of the latter. In the following commentary, I will argue that Pokropski's claim is unjustified for methodological reasons. In this regard, I attempt to show that (1) Pokropski fails in defining the method of functional phenomenology and, what follows, he does not employ the method used by Husserl. Against this background, (2) I will suggest an alternative approach to Pokropski's reading.Pokropski , p. 883 different from the method of transcendental phenomenology; finally, (3) eidetic  psychology describes the structure of experience as the noetic–noematic correlation.Pokropski's view on Husserl's phenomenological psychology can be summarized as follows: (1) eidetic  psychology is a discipline that mediates between transcendental phenomenology and experimental psychology; (2) Husserl's psychology applies the reduction—called “eidetic,” or “phenomenological”—that is first thesis follows directly from Husserl , but rather as pure experiences. Otherwise, Husserl's eidetics would consist in gradual and inductive generalizations. Simply stated, eidetics would then become a natural science. Contrary to Pokropski, Husserl's eidetic approach is transcendental through and through. This means that eidetic approach requires the reduction. Yet, reduction in phenomenology does not exclude—as Pokropski suggests—anything, say the natural or the world. Rather, it leads back (re-ducere) to what is experienced as such, i.e., in its essence. Accordingly, it is a mere change in focus. Reduction thus understood makes possible a systematic analysis of the world–subjectivity correlation: whereas eidetic tools illuminate some transcendental concepts, this is possible only within the transcendental attitude which, in turn, gives leading clues for further eidetic inquiry. The object for eidetic psychology is transcendental, or purified consciousness. For Husserl  Logical Investigations. Indeed, the latter theory is unable to account for the theory of Ideas I, since it leads toward a new psychologism, as Husserl  to define phenomenology as distinct from psychology [see e.g., Spiegelberg , Fisetteokropski , p. 878 y Zahavi , cognitiafter the transcendental reduction; by doing so, the psychologist does psychology which is transcendentally founded. Yet, it is hard to define this new psychology. Zahavi critically discusses Davidson and Cosgrove's attempt at defining psychology as founded on the “personal attitude,” and Morley's demand that psychology has to employ a methodological metareflection on how to secure the reduction. Zahavi is skeptical about such attempts and he holds that the epoché and the reduction are not essential to non-philosophical applications of phenomenology. At this point, phenomenology stops being a fundament for non-philosophical disciplines, including psychology and cognitive science, but instead it can establish an exchange between various non-philosophical fields. Admittedly, this approach implies a revision of at least some claims of Pokropski, but, again, it seems to be arguably more efficient since it does not require to address the methodological question of how to develop a non-transcendental psychology which uses transcendental tools.In general, Zahavi critically examines van Manen's and Giorgi's demand of an adaption the reduction to the human sciences, especially within qualitative research. In this regard, Zahavi refers to the tension present in Husserl's psychological writings which makes hard to address the question whether the epoché and the reduction are really essential to phenomenological psychology. According to Zahavi , “there WP reviewed the literature, developed the theoretical stance, wrote the manuscript, and prepared to publication.The author declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


Background: Many countries around the world are currently threatened by the COVID-19 pandemic, and nurses are facing increasing responsibilities and work demands related to infection control. To establish a developmental strategy for infection control, it is important to analyze, understand, or visualize the accumulated data gathered from research in the field of nursing. Methods: A total of 4854 articles published between 1978 and 2017 were retrieved from the Web of Science. Abstracts from these articles were extracted, and network analysis was conducted using the semantic network module. Results: ‘wound’, ‘injury’, ‘breast’, “dressing”, ‘temperature’, ‘drainage’, ‘diabetes’, ‘abscess’, and ‘cleaning’ were identified as the keywords with high values of degree centrality, betweenness centrality, and closeness centrality; hence, they were determined to be influential in the network. The major topics were ‘PLWH’ (people living with HIV), ‘pregnancy’, and ‘STI’ . Conclusions: Diverse infection research has been conducted on the topics of blood-borne infections, sexually transmitted infections, respiratory infections, urinary tract infections, and bacterial infections. STIs (including HIV), pregnancy, and bacterial infections have been the focus of particularly intense research by nursing researchers. More research on viral infections, urinary tract infections, immune topic, and hospital-acquired infections will be needed. Many countries around the world are currently threatened by the COVID-19 pandemic. As of mid-December 2020, 1,630,000 people have died from COVID-19 and more than 73 million people have been infected [The risk of transmission of infections to the community at medical institutions is always present because medical institutions have many employees and visitors, as well as patients with infectious diseases and frail patients susceptible to infections. Therefore, it is very important to establish and implement strategies to protect patients, visitors, employees, and community members from infections .Accordingly, medical institutions and health authorities are striving to establish infection management systems to protect medical institutions and communities from the increasing threat of infection. As nurses are key health personnel in charge of infection prevention and management, they are at the forefront of these initiatives; therefore, nurses are facing increasing responsibilities and work demands related to infection control ,4.In this context, an in-depth exploratory study would shed valuable light on whether related research is being conducted in connection with the increased risk of infection, and the findings of such an analysis would have important implications for establishing infection control strategies. Therefore, the research trend of infection research in the field of nursing should be characterized. Although it is known that extensive research related to infection in the field of nursing has been carried out, it is more challenging to understand what insights and value are conveyed by the large amount of published data . For thiText network analysis visualizes text from big data sources, which contain a wide range of text data, as a network, showing the most relevant keywords, as well as their relationships and structures . The conThe aim of this study was to identify the core keywords and topics of infection-related research over the past 40 years to better understand research trends in the field of nursing and public health. These findings can serve as a cornerstone for strategic developmental directions in infection control and may furnish directions for future research.This study was a quantitative content analysis to identify the core keywords and to explore topics of research on infections in the academic field of nursing. Abstracts from published infection studies constituted the dataset. The relationship between concurrent keyword emergences was identified to investigate infection research trends and characteristics of the relevant field.(1)Selection of literature for analysis: The years of publication for articles were limited to between 1978 and 2017, and a literature search was conducted from January to April 2018 using Web of Science. Seven researchers made a list of relevant search keywords by referring to MeSH terms and previous literature reviews, and established the final search keywords through a discussion. The following keywords were used as search terms: ‘infection’, ‘disinfection’, ‘protective isolation’, ‘standard precaution’, ‘surgical asepsis’, ‘medical asepsis’, ‘infectious disease’, ‘respiratory protection’, ‘personal protective equipment’, ‘isolation’, ‘isolation precaution’, ‘sterilization’, ‘apron’, ‘gloves or gloving’, ‘gowns or gowning’, ‘hand hygiene’, ‘hand washing’, ‘healthcare associated infection’, ‘hospital infection’, and ‘nosocomial infection’. One author (JW) compiled a comprehensive dataset from the search results.(2)Selection of the analysis units: In total, 7082 articles were retrieved from Web of Science, which includes a comprehensive range of nursing, medical, psychological, and social scientific literature. The retrieved articles were equally divided and randomly distributed by one author (KK) among seven researchers for a visual examination of the abstract for every record. After reviewing the distributed articles, all seven researchers jointly discussed the content, and after refinement of the results through discussion and consensus, a total of 4854 papers were selected for analysis, after the exclusion of 2228 papers that were not related to nursing, were unsuitable for the research topic, or did not have the appropriate format of a paper. Even if an article was not written in English, it was included in the dataset if an English abstract was provided. When searching the literature, the country was not designated separately, and only journals were included in the article format. Conference abstracts and reports by organizations were excluded. The original search results contained articles related to infection in various fields, including animal studies and physiology, while the refined database used for further analysis was composed of literature in the field of nursing science.(3)Generation of co-occurrence matrices and network: The abstracts of the selected documents were extracted and arranged into a single row in Excel, which was exported into the NetMiner text mining program. The keywords used in the abstracts were extracted using a semantic network module in the NetMiner program . All nouns were collected by auto-filtering in this program and were manually converted to singular forms, and synonyms were grouped together and expressed by a representative word . The use(4)Text network analysis: To identify the core keywords in the field of infection research, the importance of individual keywords in the network and how close they were to the central position of the network were assessed using the frequency of occurrence, the term frequency–inverse document frequency (TF–IDF) index, and three centrality indices  .Based on the frequency of occurrence, word clouds based on TF–IDF values were generated to exclude words commonly used in most papers and identify only the important words in each article. The TF is the number of times a particular word appears in a particular document. The IDF is the reciprocal of the frequency of a particular word in all documents . In otheIn centrality analysis, degree centrality shows how many links a node of the network has, and betweenness centrality reflects the degree to which a keyword plays the role of an intermediary in the network. Closeness centrality shows how close a keyword is located to other keywords .(5)Topic modeling: The topics represented by the keywords were identified through topic modeling analysis using the latent Dirichlet allocation (LDA) technique. LDA assumes a document is a mixture of a few unobserved (latent) topics . LDA finIn this study, a total of 4854 articles related to infection nursing research from 155 journals were analyzed . With respect to the number of articles according to the year of publication, the first results were two papers on the stigma experienced by trauma patients in 1978. Subsequently, only 511 articles were published in the 1990s. The number of published papers then more than doubled in the next decade, with 1320 papers published in the 2000s and 2948 papers published in the 2010s .An analysis of keywords in nursing research in terms of the simple frequency of occurrence showed that the keyword with the highest frequency was ‘care’ (239 articles), followed in order by ‘nurse’ (237 articles), ‘HIV’ (237 articles), ‘use’ (125 articles), ‘intervention’ (77 articles), ‘treatment’ (62 articles), ‘hospital’ (60 articles), ‘disease’ (55 articles), ‘knowledge’ (52 articles), and ‘control’ (50 articles) .The keyword with the highest TF–IDF value was ‘readmission’, followed in order by ‘operation’, ‘muscle’, ‘meningitis’, ‘inhibitor’, ‘biopsy’, ‘bath’, ‘aeruginosa’, ‘SARS’, and ‘CD4′ .As a result of centrality analysis using the word network extracted from the abstracts, ‘wound’, ‘injury’, ‘breast’, ‘dressing’, ‘temperature’, ‘drainage’, ‘diabetes’, ‘abscess’, and ‘cleaning’ were identified as the keywords with high values of degree centrality, betweenness centrality, and closeness centrality; hence, they were determined to be influential in the network .Ten topics were derived through topic modeling analysis . When thThis study aimed to identify the core keywords and topics of infection-related research over the past 40 years to better understand the research trends in the field of nursing, and tried to show where nursing research is currently and where it is headed. Our study suggested that a substantial proportion of infection research in nursing has focused on ‘PLWH’, ‘STI’, ‘pregnancy’, and ‘bacteria’. Nursing researchers’ interest in ‘virus’, ‘HAI’, ‘UTI’, and ‘immune topic’ was relatively low, and studies of gastrointestinal infections and community-related research were not identified as significant topics. Our study discovered infection-related research trends by using big data in nursing research to help researchers gain insights into future research. A detailed discussion of these findings is presented below.Infection-related nursing research has expanded rapidly since the 2000s; the number of published articles more than doubled in the 2000s compared to the previous decade, and more than doubled again in the 2010s. This rapid growth is most likely because the need for the prevention of infections was highlighted due to the worldwide outbreak of emerging infectious disease, as well as the threat posed to patient safety by the rapid increase in hospital-acquired infections (HAIs) with the developments in medical services ,20,21.The five keywords with the highest frequency of occurrence were ‘care’, ‘nurse’, ‘HIV’, ‘use’, and ‘intervention’. After excluding ‘care’, ‘use’, and ‘intervention’ as general keywords, the occurrence of ‘nurse’ and ‘HIV’ on this list was notable. It is believed that ‘nurse’ showed a high frequency of occurrence because nurses are involved in infection control in local communities and medical institutions. In addition, HIV was studied overwhelmingly more frequently than other infections. Among the other words included in the top 30 keywords, ‘hospital’, ‘catheter’, ‘wound’, ‘hand’, ‘guideline’, and ‘cancer’ are also remarkable. These keywords show that many infection-related nursing studies have been centered on hospitals, suggesting that the scope of research needs to be expanded to the prevention and control of infections occurring in the community. In addition to ‘HIV’, which was the third ranked keyword and is related to types of infections, ‘catheter’ and ‘wound’ were also among the keywords frequently appearing in nursing research. The high frequency of ‘hand’ is attributed to the importance of hand hygiene for infection prevention. In addition, the keyword ‘guideline’ reflects the fact that the establishment and implementation of guidelines based on a high level of evidence are the main strategies for infection prevention. The keyword ‘cancer’ corresponds to a disease group for which considerable research on infection in nursing has been conducted, due to the fact that cancer patients are at an elevated risk of exposure to infection because their immune system is weakened by cancer treatments.TF–IDF is a method of presenting important words by excluding keywords that generally appear in many articles. This allows the identification of keywords that are more specifically focused on the topic of infections than those identified by analyzing the raw frequency of occurrence. The word with the highest TF–IDF value was ‘readmission’, followed by ‘operation’, ‘muscle’, ‘meningitis’, and ‘inhibitor’ in descending order. This suggests that infections lead to hospital readmissions, and many studies have been conducted on infection control and surgical wound infections related to surgery . The topNonetheless, since bibliometric indicators, such as the frequency of occurrence and centrality indices, have limitations in identifying key themes in a research field, key research topics were derived through topic modeling. In this study, LDA algorithm identified 10 key topics, and are listed in descending order in terms of the group size (determined by number of articles per topic) as follows: ‘PLWH’ (people living with HIV), ‘pregnancy’, ‘STI’, ‘bacteria’, ‘vaccination’, ‘HCP’, ‘HAI’, ‘immune topic’, ‘virus’, and ‘UTI’. It indicated that many studies have been conducted on infection control in the field of nursing. Most of all, this study identified four major topics, such as ‘PLWH’, ‘pregnancy’, ‘STI’, and ‘bacteria’.Because HIV was a keyword with a high frequency of occurrence, it is unsurprising that PLWH was derived as the key topic with the largest group size. In this regard, the Joint United Nations Program on HIV/AIDS is actively engaging in efforts to end the AIDS epidemic by setting the ‘90-90-90’ target, according to which, by 2020, 90% of HIV-infected people will be aware of their HIV status, 90% of diagnosed HIV-infected patients will receive antiretroviral therapy, and the HIV infection will be suppressed successfully in 90% of patients receiving treatment. In addition to these efforts, the content of relevant nursing research is reflected by the keywords ‘stigma’, ‘transition’, ‘self-care’, and ‘collaboration’, which belonged to the topic of ‘PLWH’. These words illustrate the nature of nursing with the aim of helping HIV-infected patients to overcome social stigma and lead a successful life and perform self-care, including medication therapy .The topic ‘pregnancy’ and sub-keyword ‘condom’ reflect the fact that sexually transmitted infections during pregnancy, which cause vertically transmitted infections from the mother to infant, are considered important in the field of infection research. The Centers for Disease Control and Prevention in the United States recommend that all pregnant women be screened for HIV, syphilis, hepatitis B virus, and chlamydia trachomatis, and that tests for Neisseria gonorrhea and hepatitis C virus should be conducted on high-risk mothers . In addi‘STI’ was also found to be an emerging research topic in the same context of PLWH research. Among its sub-keywords, ‘violence’, ‘loneliness’, ‘youth’, and ‘threat’ merit ongoing attention in future nursing research. In ‘bacteria topic’, ‘wound’ had a high frequency of occurrence, and its sub-keywords included words related to the management of instruments and devices, such as ‘disinfection’ and ‘sterilization’; words regarding wound management, such as ‘cleaning’ and ‘dressing’; and disinfectants, such as ‘chlorhexidine’. Hospitals accommodate patients who have a high risk of infection due to reduced immunity, as well as people who require surgical, medical, or other treatments. This result shows that the critical role of nurses who come into close contact with these patients is to prevent patients from bacterial infection.The fact that ‘HCP’ emerged as a key research topic closely related to ‘nurse’, a term with a high frequency of occurrence, reflects the important role of nurses in the prevention and control of infections in the community and medical institutions. This point is supported by sub-keywords, such as ‘staffing’ and ‘nurse’. Medical institutions should secure sufficient infection-related personnel for effective infection control. In addition, there is a growing interest in exposures to infection and subsequent healthcare among healthcare workers. Among the sub-keywords of ‘manpower’ was ‘HCV’, which reflects the increasing frequency of accidental exposure to infections, such as needle-stick injuries, among nurses . Moreove‘HAI’ was derived as a key topic because HAIs prolong the length of hospital stay, increase the mortality rate, incur human and economic losses, and cause the spread of bacteria resistant to antibiotics, including multidrug-resistant bacteria, which pose a major threat to public health. In this regard, the importance of detailed nursing management should be emphasized to prevent HAIs in the future. Academic courses on infections are required and the importance of infection control needs to be emphasized in nursing education . In addi‘Outbreak’, ‘influenza’, ‘SARS’, ‘CAP’, and ‘respiratory’ emerged as key words in the ‘virus’ topic. Currently, the COVID-19 pandemic has brought a number of challenges for nurses. In-depth discussion is needed on the insufficient availability of protective gear and material, uncertainties regarding the trajectory of the disease, which has been a problem in this corona pandemic, and establishment of quarantine measures. Nursing faculty and nursing leaders need to plan for the potential of an extended pandemic response, and for changes that will be needed in a post-COVID world .In this study, while pregnancy, bacteria, and HIV were identified as major research topics, waterborne infections, gastrointestinal infections , and food poisoning were not derived. Because we did not collect information on the countries where studies were conducted, we could not be certain, but we assumed that this finding might have occurred because most of the studies analyzed may have been conducted in developed countries. In the future, further research will be needed to address health inequalities between developed countries and underdeveloped countries. Therefore, further research on gastrointestinal infections, such as waterborne infections and food poisoning, is needed. Moreover, infections occurring in the community were overlooked because most studies were centered on medical institutions.Although this study only included research conducted through 2017, before the COVID-19 pandemic, ‘virus’ was derived as a main topic. If more recent data were to be included, the proportion of ‘virus’ as a topic would be expected to exceed the value of 8.2% observed in this research. Further research should explore how the situation has changed after the emergence of the COVID-19 pandemic.This study used an innovative approach to reveal the trend of infection control studies over the past four decades. This is important as it can inform researchers what further area(s) they should work on to enrich the body of knowledge. Unlike traditional systematic review and meta-analysis, the semantic network analysis tries to present the trend of study which cannot be revealed by systematic review and meta-analysis. Such an analytical approach does enable researchers to examine a study area from another perspective. It is also a trend now that researchers try to use these data mining approaches to reveal the study trend in order to look for area(s) that need further effort to work on. In particular to this study, it clearly identifies the 10 most popular topics being studied, such as STI, HAI, and UTI, in the field of nursing.Our focus on abstracts rather than the full-text analysis means much data were left unexplored. We feel that abstracts contain more information than titles or keywords, and are considered appropriate as they contain the subject of the entire article. To establish a search strategy that can be objectively verified at the data collection stage, we strategically searched for infection studies with the advice of an external professional, and only those studies in which agreements were reached between all researchers were included in data analysis. Therefore, there is a limitation that some nursing studies related to infection may have been excluded from the analysis.As a result of examining the trends of infection research in the fields of nursing, it was found that various fields of research were conducted in relation to infectious diseases. Through this study, there is great significance in that it presents a perspective on future research fields by presenting researchers with a relatively undeveloped research field in which research is active and relatively undeveloped. In particular, conducting research on infectious diseases in relation to infection and encouraging research that increases human immune function at the same time is considered to be a preparation for outbreaks related to infectious diseases in the future.This study showed that diverse infection research has been conducted on the topics of bloodborne infections, sexually transmitted infections, respiratory infections, urinary tract infections, and bacterial infections. STIs (including HIV), pregnancy, and bacterial infections have been the focus of particularly intense research by nursing researchers. More research on viral infections, urinary tract infections, immune topic, and hospital-acquired infections will be needed.


Julia Genz, Paul Gévaudan, editorsPolyphonie in literarischen, medizinischen und pflegewissenschaftlichen TextsortenVandenhoeck & Ruprecht VerlageYear of publication: 2021, 243 pages, prize: € 40,00ISBN: 978-3-8471-0990-7For patient-centered medicine, language and communication in healthcare are important factors that are increasingly becoming the focus of research and medical education. The concept of the anthology “Polyphonie in literarischen, medizinischen und pflegewissenschaftlichen Textsorten”  emerged from an interdisciplinary conference on polyphony at the University of Witten/Herdecke in 2018.The meeting was to provide an opportunity to explore the application of different concepts of linguistic, musical and literary polyphony and their role and integration in different text genres, especially those of health care and medical education. This includes doctor and patient letters and discussions as well as care documentations. Linguistic polyphony is a widespread but also little perceived phenomenon. Polyphony that is not reflected as such can often lead to misunderstandings; and that this is still a field of tension can be seen when reading the volume. The careful use of polyphonic techniques, on the other hand, can lead to a significant improvement in communication, not only in the healthcare sector. To start with, the editors provide a short, helpful introduction giving a good overview of the contributions, divided into five sections. The anthology closes with a description of the individual authors.In the first chapter, “Theoretische Positionen“ , the basics of the theory of polyphony are presented in two linguistic contributions. Current theoretical positions and explanations of Bachtin’s concept of narrative polyphony, published in 1929, which Oswald Ducrot later transferred to argumentative discourses, show the relevance of the topic. Then the basic concepts of linguistic polyphony are analyzed from three points of view and these are transferred into an understandable German terminology.The second section, “Literarische Polyphonie” (“literary polyphony”), deals with Bachtin’s concept of polyphony in three contributions, both from a music and a literary perspective. It provides a brief historical overview of the five epochs of musical polyphony and their different manifestations. Using literary examples, the concept of the “theory of text interference” and that of the “unreliable narrator” are compared to one another and how they can complement each other. In the last contribution, the linguistic decoding processes of reading are shown, based on novel texts, a content-wise challenging but exciting contribution.After the first two sections, which focus on the basics of literary studies, chapter three, “Schnittstelle zwischen Literatur und Medizin” (“interface between literature and medicine”), directs the focus to medicine in two very interesting contributions. Julia Genz uses two physicians, Sigmund Freud and Alfred Döblin who were also “literary” and used polyphony in a similar way, but achieved different results. D. Teufel and P. O. Berberat deal with the question to what extent the reflection on polyphony could be integrated into medical studies and show how this could be practiced in a playful way.The fourth section, “Polyphonie in Arzt – Patienten-Gesprächen” (“polyphony in Doctor-Patient Conversations”), contains four contributions that are specifically based on clinical practice and the use of polyphony there. Beginning with the treatment of oncological patients, juvenile seizure patients and the doctor-patient relationship in general to communication with animals and their owners in veterinary medicine. This last contribution by the author couple Ehlers will be emphasized here, as it gives medical doctors a special insight into communication among and with animals, carried out in an exciting and descriptive way.Chapter five, “Textsorten und Diskurse im Gesundheitsbereich” , with three contributions on the influence of polyphony in patient letters, within the discourse on depression and the nursing documentation, spans another arc into practice and rounds the anthology off very well.Through careful selection of topics and authors, the editors of this book have succeeded in creating a synthesis between literary studies, linguistics, musicology and health care. The structure of the volume enables to the transfer of profound theoretical knowledge to everyday clinical practice and thus presents the use of polyphony. Through the multi-faceted and clear conveyance of background information, also inexperienced readers are provided with practical aids for everyday clinical practice delivers. Not least in view of the moderate price, this book can be recommended to readers interested in this subject.The author declares that she has no competing interests.


Lockdowns in Australia have been strict and lengthy. Policy-makers appear to have given the preservation of quantity of lives strong priority over the preservation of quality of lives. But thought-experiments in population ethics suggest that this is not always the right priority. In this paper, I'll discuss both negative impacts on quantity of lives caused by the lockdowns themselves, including an increase in domestic violence, and negative impacts on quality of lives caused by lockdowns, in order to raise the question of whether we each had reason to choose quantity over quality in our own lives in a way that would justify the lockdowns we had. In population ethics, the focus has generally been imagined future populations. Philosophers discuss the value of continuing the lives already in progress rather than replacing them with new lives; whether existence itself is a harm, neutral, or a benefit; what a life has to be like for a person to be indifferent between life and death; the things that make life worth living; and how to make trade-offs between quantity (the number of people in a population) and quality . The motivation has been, variously, challenges to the consequentialists’ ideal of the greatest wellbeing for the greatest number, and reflections on what we owe to future generations, especially in light of climate change.But population ethics is not only about imagining future populations in the service of refining our moral principles for the current population’s use. Policy-makers have been doing a kind of population ethics for the past two years, since the COVID-19 pandemic begin. Their trade-offs have not been between quality of life and increases in population size through birth or immigration, but rather between quality of life and the prevention of decreases to the population by way of COVID-19 deaths. They have had to make decisions about the badness of existing lives not continuing, or of being shortened from what they otherwise would have been, and the badness of subjecting people—people of various levels of vulnerability—to the risk of death or serious disease (e.g. long-COVID), compared to the reduction of people’s quality of life caused by lockdowns. Both are trade-offs between quantity and quality of life in a population.Because population ethicists are usually thinking about increases (population growth), stability (population replacement), or decreases (population reduction) being a matter of people having greater or fewer numbers of children, or the state accepting greater or fewer numbers of immigrants, there is more space for ambivalence about the respective values of quantity and quality. We can ask whether resources are so scarce that a hypothetical baby would create additional pressure that reduces everyone else’s share, without feeling that we are wronging the baby. But these questions look more callous when we are talking about existing people, wondering whether it’s permissible to implement policies that will predictably end or shorten some of their lives, in order that other people’s wellbeing not be reduced.Perhaps this explains why, at least in Australia, lockdowns have been so strict and so lengthy. We are not, really, trading off between quantity of lives and quality of life. Rather, we are giving the preservation of existing quantity—the continuation of existing lives—strong priority over quality. Significant reductions in quality of life are justified on the basis that they protect against a reduction in quantity of lives.1quantity versus quantity, with one set of impacts on quantity being largely overlooked. I will elaborate on these in Sect. There are two complications, however. One is that policy-makers have tended to focus on the risk of death and disease caused by COVID-19, but not the risk of death and disease caused by the proposed mitigation strategy, namely lockdownslife (with no hope of parole) the considerations adduced in Sects. part of life, gives the following discussion a slightly different role. It asks us to start taking seriously the question of when the costs of lockdowns would start to outweigh their benefits; whether we’ve been working with a full enough understanding of what the costs and benefits actually are; and whether we’ve been assigning the right weighting to those respective costs and benefits. .Lockdowns are temporary, and as I write this paper in November 2021, they seem to be ending. If lockdown life were just A and B. A is a small population with very high quality of life. B is twice the size of A, and has about two-thirds of A’s level of wellbeing. In each population, quality of life is equal between individuals (“no one is worse off than anyone else”) . In giving some texture to B’s comparatively lower wellbeing, Parfit suggests “There might be worse housing, overcrowded schools, more pollution, less natural beauty, and a somewhat lower average income” (ibid).5B’s greater size also leads to B’s having a greater total population wellbeing than A. So if we care about total population wellbeing, we might think that B is better than A. The quality of life is lower, but it is still good, and more people get to have the lives that are worth living.Parfit  introduc) Parfit , p. 385.C, double the size of B and with lower quality of life but still lives worth living; and so on) all the way to a population that is huge and all of whose members have lives just barely worth living. But many people’s intuitions flip at this point, or somewhere before it: a smaller population of people with higher quality lives is better than a larger population of people with lower quality lives. This is a strike against the utilitarian, because it is not total population wellbeing that determines which population is more desirable from a moral point of view. Parfit calls the end of the sequence—the largest population with lives “not much above the level where life ceases to be worth living” —the Repugnant Conclusion. He thus shares the intuition that quantity does not have priority over quality.Parfit shows that we can repeat this exercise , or add someone from another population into our own (population increase by immigration). An existing person might die (population decrease by death), or might move into another population than our own (population decrease by emigration). Even if we all agree that a population with fewer people who have higher quality of life is preferable to a population with greater numbers of people who have much lower quality of life, that wouldn’t justify deliberately moving from the latter to the former at a time, or within a short period of time. The available means for doing so are morally prohibited, e.g. forced deportation,However, Parfit’s populations were only imagined, and in the sequence from preventing deaths from COVID-19maintaining quality of life . That means there is also no question of increase to population in order to increase total population wellbeing through the number of people with lives worth living. All that is at issue when it comes to quantity is the preservation of existing lives. It may be that people’s intuitions about quality vs. quantity would change when what’s at issue is maintenance of an existing population rather than increase to population. Increases in Parfit’s hypothetical populations add ‘strangers’ who could have no prior social ties, and no right to exist. Decrease in our actual population subtracts existing people, embedded in webs of social relationships, and—at least arguably—with a right against preventable death.Facing COVID-19, with Australia’s international border closed, there is no question of change to population size via immigration/emigration. The quality/quantity issue is the narrower one of Here we hit our first difficult conceptual question. Say that instead of lockdowns, the Australian federal and state governments simply let COVID-19 run its course, and this led to significantly more deaths. In this scenario, what obligation did the respective governments have to those who died, and in what way did they fail in those obligations? If each residentafter the average age of life expectancy. Life expectancy is 82.9 years,ibid, p. 25). One might argue that there is no obligation to preserve life after the age of life expectancy; or more weakly, that the strength of the obligation to preserve life after the age of life expectancy is reduced. . Suppose, on the other hand, that the government has negative obligations not to let people die. Letting die is very bad, so this is likely to justify giving priority to quantity (preservation of the existing population) over quality. Whether we think the obligations are negative or positive may depend on the character of the particular population’s government, and the expectations of the people who have lived under it. I will not attempt to resolve this question here; only raise it for consideration.Negative obligations are generally taken to be a lot stronger than positive obligations, so in a contest for priority quality might do better against quantity when it is a matter of positive obligations to preserve life (by saving/rescuing) than a matter of negative obligations not to destroy life (here by letting die). Suppose the government has only positive obligations to preserve life. In Australia, the majority of deaths from COVID-19—59%—occur ibid, pp. 7–8), and  equality . A very short life; a life that ‘roller-coasters’ between good and bad things, containing lots of bad even if also lots of good; and a life that is ‘drab’, containing “very little that was good” (Parfit ibid).It will be helpful to get a clearer idea about lives worth living, and what contributes to increases in the quality of life, in order to know how to think about this abstract trade-off between quantity of people and quality of lives. In a  paper, P” Parfit , p. 118;Parfit does not say much about lives not worth living. He gives one dramatic example, that he calls ‘Hell’: “In this outcome the extra group are innocent people who all have lives which are much worse than nothing. They would all kill themselves if they could, but their torturers prevent this” . He judges that the Century of Ecstasy is a better future than the Drab Eternity, and notes that “Many people would have the same belief, and preference” , Peter Godfrey-Smith writes:ibid). One of his examples is the longer-term impacts of “suddenly expanding the educational gap between wealthy and poor children, owing to the greater ability of rich families to keep their kids’ education going through public school closures”, and worries that these impacts could be “catastrophic” (ibid).Some of the harms he has in mind are reductions in quality of life, which I will take up in Sect. both deaths from COVID-19 and deaths from “the effects of lockdowns and related policies themselves” . Deaths from lockdowns (or with lockdowns as a contributing cause) will become virtually impossible to track over the longer-term, as they are folded into ordinary mortality statistics.One measure for tracking mortality impacts of COVID-19 is “excess deaths” relative to some baseline, but this measure will include of lockdowns, my focus will be largely on the effects within lockdowns). The first is the increase in domestic abuse affecting mostly women. The second is the increase in severe stress caused by economic insecurity. The third is the long-term health impacts of increased consumption of alcohol, and weight gain.In this section I’ll focus on three main sets of impacts on quantity of life caused by lockdowns. . In one county in Jingzhou, China, reports of domestic violence in February 2020 had tripled relative to the same month of the previous year . A shelter in New York city serving mainly Latin American women had a 35% increase in calls to their help line between February and March 2020 . The Institute found that 4.6% of the women surveyed had experienced physical or sexual violence  from a cohabiting partner (current or former) in the three months before the survey; that 5.8% had experienced coercive controlibid, p. 1 & pp. 6–7). They also found that two-thirds of the women who had experienced physical or sexual violence “said the violence had started or escalated in the three months prior to the survey” . When the pool of respondents was limited to those who had been in the same relationships for the last 12 months,ibid, p. 6). If we take physical violence, sexual violence, and coercive control together, then 6.8% of the women surveyed, and 13.2% of the women in the same relationships for the last twelve months, had experienced at least one of these .No such increases were reported in Australia .Lockdowns not only give abusers more control over their victims, but also make it harder for victims to escape or turn to their regular networks for support. It was already well-known, prior to lockdowns, that ‘Domestic violence goes up whenever families spend more time together, such as the Christmas and summer vacations’, and that ‘abusers are more likely to murder their partners and others in the wake of personal crises, including lost jobs or major financial setbacks’ Taub . These pibid).There are impacts not only on the women who are the majority victims of abusers, but on their children. There was a 17% increase in calls and texts to a national child abuse hotline in the United States in April 2020 compared with the same month in the previous year . They found that absent domestic abuse, there would have been 41% less female-victim homicide and violence, 18% less early pregnancy loss, 19% less suicide and self-inflicted injuries, 19% less depressive disorders, 12% less anxiety disorders, and 4% less alcohol disorders. Overall, domestic abuse was thought to have contributed to 223 deaths, and 1.6% of the total disease and injury burden, for 2015 (ibid). In 2017–2018, 6500 out of 21,300 hospitalisations for assault  in Australia were caused by family and domestic violence, with 4,800 of those people being female (73%) and 1700 being male (27%). 292 of the females were pregnant (ibid).The Australian Institute of Health and Welfare reports on the health impacts of domestic abuse. They start with a 2015 study estimating the disease burden caused by domestic abuse.If the incidence, frequency, and severity of domestic abuse increases during lockdowns, then there will be a corresponding increase in these negative impacts on the overall disease burden. These are ‘quantity of life’ issues, and yet they were not factored into decision-making about locking down to avoid the COVID-19 -specific mortality and morbidity risks.The Australian Bureau of Statistics tracked the impacts of COVID-19 and policy responses to it on Australian jobs and businesses in the year following restrictions first being announced (March 2020–March 2021). In March 2020, 66% of businesses reported a reduction in turnover and 64% reported a reduction in demand. In April 2020, hospitality jobs decreased by 35%, and underemployment hit a historic high of 13.8%, with 1.8 million Australians working either reduced hours, or zero hours. By May 2020, 870,000 people had lost their jobs, and 72% of businesses saw their revenues decreased. In July 2020 unemployment was 7.5%, the highest it had been in more than 20 years. By November 2020, there had been 64,000 jobs lost in retail and hospitality management, 64,000 jobs lost in hospitality, and 43,000 jobs lost in sports and personal services (ABS 24ibid). Employment rates were worst for Victorians aged 18–24, recovering from May 2020 in the rest of Australia, but worsening from June 2020 for Victorians (ibid).Young women were more likely than men to have lost their jobs due to COVID-19: 45% of women aged 18–24 lost their jobs, compared to 34% of men in the same age bracket. More young women than men reported “high levels of mental distress”, too: 24% of women compared to 21% of men. This “likely reflect[s] women’s greater representation in the industries directly affected by COVID-19, and increased caring responsibilities during the pandemic” Kabatek . UnemploAll of those affected by job losses or reduced hours are likely to have expenses—rent or mortgages, bills, food and other essential goods. This is a significant source of stress, worrying about how to make payments. Even with government support programmes like JobKeeper and JobSeeker, the relief payments may not have been sufficient to cover an individual’s existing financial commitments.ibid). Fathers were the most impacted; prior to the pandemic only 5–9% reported mental distress at high levels, and this increased during the pandemic to 25% of fathers with a youngest child aged 0–4 and 33% of fathers with a youngest child aged 5–11 (ibid). Distress rose for both unemployed and employed parents, from 20 to 36% in unemployed fathers, and from 7 to 27% in parents with a youngest child aged 5–11 (ibid). In terms of the numbers of people affected, there were estimated to be roughly 330,000 unemployed fathers, meaning about 120,000 unemployed fathers were experiencing “high mental distress”; and there were estimated to be nearly 1,500,000 parents of children aged 5–11, meaning close to 400,000 parents experiencing high mental distress .Even those who didn’t lose their jobs or have their work hours reduced experienced work-related stress. An August 2020 report by the Melbourne Institute noted that the COVID-19 pandemic had introduced “two major sources of mental distress: financial stress, and stress caused by work-family-conflict” . An existing cohort of Australian mothers based in either Victoria or Tasmania with children aged between 5.9 and 7.2 years old was surveyed between May to December 2020. Of the 319 respondents, 85 reported that they had experienced job or income loss (27%), and 83 reported that a family member had experienced job or income loss (27%) .When it comes to explaining this increase, the report suggests it is not primarily a matter of financial stress when it comes to employed parents, because their reported rates of financial stress were similar to other parents’. More likely the explanation was “life changes beyond their family’s financial situation: namely, widespread working from home arrangements and school closures” , on cognition and learning , on immune system function , on cardiovascular system function , on the gastrointestinal system , and the endocrine system . Stress can cause changes in the brain that reveal themselves as “behavioural, cognitive, and mood disorders” . The American Psychological Association also include impacts on the male and female reproductive systems in the list of health impacts of stress.27What are the health impacts of stress? A literature review from 2017 notes that there has been research into the effects of stress on the nervous system since 1968 (so for over 50 years), with studies showing a range of impacts including “structural changes in different parts of the brain”, and “atrophy of the brain mass and decrease in its weight” , 246 women consuming more alcohol (23.8%), and 185 women stockpiling alcohol at home (17.9%)  also feeds into other impacts; the Australian Institute of Criminology identifies “increased alcohol consumption among domestic violence perpetrators” as a factor contributing to increases in both the prevalence, and the severity, of domestic violence perpetrated during the course of the pandemic   against quantity (of death and disease from extended lockdowns) we’d have to know the counterfactuals, namely what the total deaths, and excess deaths, from COVID-19 would have been without extended lockdowns.These are modest totals, but supporters of lockdowns will argue that they are so modest precisely The Australian:For the past 18 months, I have been taking the same walk through the same Melbourne suburban streets in the same direction at roughly the same time every day. I’ve thought at times of varying it but always refrained. It wasn’t a pleasure, nor was it a “freedom”, except in this word’s modern sense as a privilege granted by a premier. So I wasn’t prepared to perform it other than mechanically, in precisely the mean and grudging spirit of its permission. I’m well aware this sounds perverse. It is perverse. I don’t care. We each had a way of coping with the world’s most protracted lockdown, and this was mine, with an interior monologue of quiet seething to match Haigh .Australian journalist Gideon Haigh wrote recently in The Age reported that “rough calculations using the methodology showed the city’s [Melbourne’s] stringency rating would have topped out in the mid 1990s” . They ranked countries only, but 0s” Hope . At its Melbourne’s total number of days in lockdown (through six separate lockdowns) was 262,Haigh commented on his quality of life under Melbourne lockdown explicitly: “It was, just, bearable. You could get by, providing you expected nothing good to happen, everything to take twice as long as it should, and no useful end to be served. Like a body adapting to starvation, you rationed expectation, postponed pleasure, concentrated on the little you could control in your unkempt lethargy, and thought sympathetically of the worst-off, if in an abstract sense” Haigh .ibid, p. 2); the shrinking of longer-term opportunities and the reduction of human contact, especially near the end of life (ibid); bankruptcies ; “the consequences of raising children in an atmosphere of isolation and fear” (ibid); increases to social inequality, including racial inequality, caused by disruption to education  ; ‘the socialization of young people in the years before school, unemployment and small business failure, mental health’ (ibid); a widened gap between the rich and the poor ; and changed relations between people and police forces because of the over-policing trivial things .46Much about severe and extendedibid, p. 16), are substantially delayed or disrupted at a crucial period in which they would normally be choosing careers and beginning meaningful relationships. They experience loss of direction and mental health impacts. And old people are impacted in particular by reduced human contact. What he says about reduced contact near the end of life is particularly stark:for. Some extra risks are worth taking if it means you can stay in contact with people who make your life meaningful. But this choice has been taken out of many people’s hands. The decision not to allow visitors in aged care homes and many hospital settings has surely been the source of a great amount of unseen despair and misery over the course of the pandemic .In the view of many, it is a disaster to die alone, and also to face alone, over many months, what feels likely to be the last part of one’s life, or a large part of the last stages. For many old and infirm people, companionship and contact with loved ones are fundamental, and much of what it’s worth being alive Godfrey-Smith focuses on reductions in quality at three particular stages in life. Children experience isolation and fear, have their educations disrupted, and miss out on important socialization. Young people, “people who have left school, and are in their late teens and 20 s” , dating, strengthening or solidifying relationships with extended family, with existing friends, with colleagues (difficult if not impossible to accomplish by Zoom or Teams). Even for someone without the negatives of financial stress, or family or relationship stress, spending 19 months at home, only going out for an hour or so of exercise or grocery shopping, is a life without many positives. The uncertainty of when lockdown would end, and the continually frustrated expectations of an end (with ever-extending deadlines), also disrupted entirely curtailed; if there was nature inside your 5 K zone, then you could have nature, for an hour a day (so long as you experienced it in a way that passed as exercise: no sitting about reading a book). People could, obviously, still find meaning: still read great novels, still master new skills .Is it fair to say that lockdown life, at least for many people, was Parfit’s ‘drab life’? We had more than muzak and potatoes, even at the worst of times. As to food and drink, for those who could afford it much of what was available pre-lockdown was still available for delivery, simply to be consumed inside the same walls we were all trapped inside of, and without the company of anyone not living within those walls. All the music, comedy, sport, movies, and television shows were still there, just mediated by a screen, rather than to be experienced live, as part of an audience or crowd. Freedom was not There is a lot of constitutive luck in how drab lockdown life was. The single-household extroverts lost a lot more than the single-household introverts, but the multi-person household introverts lost a lot more than the multi-person household extroverts.both preservation of quantity of life from other causes , and preservation, or minimization of decrease, in quality of life. To the extent that this policy-making decision was underpinned by an assumption that this is what a fully-informed population would choose, it would then be a bad policy.Perhaps rather than asking ‘was lockdown life worth living?’ and answering, like Haigh, ‘just barely’, the better question is, did each of us, as individuals, have reason to choose quantity  over quality of life? If we didn’t—or if most of us didn’t, and wouldn’t have chosen that if given the choice—then that would appear to create a challenge to the fact that lengthy lockdowns were imposed on us. That would be the state paternalistically intervening to impose the value of preservation of quantity of life  having strong priority over maintenance (non-decrease) over quality of life for each individual, even where that would decrease the total population wellbeing.Even if we didn’t yet have reason to prefer quality over quantity (for our own lives), it’s worth asking ourselves how long lockdown could go on before we considered ourselves to be living a version of the Repugnant Conclusion. When I’ve spoken to friends about this, answers have varied widely: 5 years is a clear case; maybe 2.5 years, but less if you’re younger; 2 years, because we can expect to have developed and administered a vaccine by then; 1 year—we’ve been in the Repugnant Conclusion for a while already. Parfit taught us that we don’t always have a reason to prefer population increase over quality of life for each individual, even where that would increase the total population wellbeing. We need to think more carefully about the inverse: whether we always have a reason to prefer population


This study explores African American parents’ experiences with using technology to engage their children in meaningful activities  during COVID-19 and its impact on family health. Eleven African American families were recruited through a local health department program from a rural Midwestern community to participate in semi-structured interviews. Majority of participants reported stresses from feelings of “sink or swim” in a digital world, without supports from schools to effectively provide for their children’s technology needs. The COVID-19 pandemic underscored the importance of family-school collaborative engagement and empowerment. Digital technology needs to become part of our school education system so that technology use among African Americans is elevated and families protected against future outbreaks. Further research with a more diverse African American sample is needed. The unprecedented emergence and global spread of the SARS COV-2 virus COVID-19) has resulted in severe social and economic consequences for families globally. Millions across the world have lost their loved ones to COVID-19 9 has res,4,5. IntIn response, governments as well as local, national, and international organizations, have taken measures to decelerate the transmission of the virus, and reduce the number of deaths associated with it . One sucFurther, the COVID-19 pandemic has highlighted one key unresolved issue related to technology tools, the “digital divide”, which refers to the growing gap in internet access between the underprivileged members of society, especially the urban and rural poor, the elderly, and children and adults with disabilities who do not have access to computers, the internet, or digital resources and the urban and suburban wealthy population who have access . An EducIn another study, responses from teachers on a question about the biggest instructional challenges during pandemic-related school closures suggest that their ability to communicate with students and their families was often constrained by students’ lack of internet or appropriate technologies at home . Only 30% of teachers in high-poverty schools (which are disproportionately minority schools) reported that all or nearly all their students had access to the internet at home, compared to 83 percent of teachers in low-poverty schools . AccordiLack of appropriate learning technologies and devices impacts how parents engage with their children and teachers on online learning. Parental involvement and support are critical for successful student learning ,25. HoweParental burnout, a stress-related disorder that is defined as “a prolonged response to chronic and overwhelming parental stress”  , to study a problem, qualitative researchers use an emerging qualitative approach to inquiry and the collection of data in a natural setting sensitive to the people and places under study . Burns aSemi-structured phone interviews were used to collect data. Interview questions were formulated in three phases. First, two researchers (AA and WM) drafted the questions based on the literature and study objectives. Second, the questions were reviewed by one researcher (RB). Third, AA and WM compiled the final list of questions. Interviews were conducted by one researcher (AA) and, on average, lasted about 45 min (range 30 to 60 min). The semi-structured interview guide  consisteAll interviews were conducted by the lead author and audio recorded. Recordings were transcribed verbatim by a professional transcriber. Data were thematically analyzed by two researchers (AA and WM) . AccordiThe three authors  who were involved with research design, data collection, and analysis were all of African descent. AA is an African-born female graduate student, WM is an African-born male researcher with expertise in the field of qualitative research, and RB is an African American female scholar. The three researchers were critically self-reflective about their own lived experiences, preconceptions, relationship dynamics, and analytic focus on the processes by which interview questions were formulated and data were collected, analyzed, and presented ,44. As BThree major themes emerged around familial adjustment to the new realities of COVID-19: (1) sudden and drastic changes to online platforms, (2) familial engagement challenges, and (3) technology use for learning and leisure. The “familial engagement challenges” theme had two sub-themes: sharing of resources and lack of Wi-Fi/internet.Thank God for the internet because other than that I wouldn’t know what to do.” (032). Another participant acknowledged the important role the internet plays in life, yet felt that going virtual had been too sudden and drastic. They stated,blessing and a curse. We understand that we can have grocery stores and we can have restaurants, we can have all this but guess what, we don’t have to leave our house if we don’t want to, for nothing. It can all be delivered and we can still be connected socially, virtually and so before this we was kind of tiptoeing into it. Now we’re going virtual…. now everybody’s been dumped into it and say, sink or swim. (038)Well, social media is a Many families appreciated use of internet in helping them to adjust to the challenges created by COVID-19. One participant expressed, “I fully supported the decision to cease that (excessive use of devices) …so where we used to have like screen time and turn the TV up and don’t look at your electronic all the time. But I started to be relaxed in all that moreso than ever because, goodness, they don’t have anything else, no other way to connect with their friends. (037)Sudden and drastic changes can be stressful and even anxiety-producing as families struggled to find ways to adjust to living arrangements that were changing drastically. Students no longer had access to the computers and Wi-Fi at school. Families who were accustomed to their children spending the day at school had to deal with finding activities to engage them in ways that fostered resource sharing. Although parents observed that their children were more engaged with activities delivered through their electronic devices, e.g., phones, tablets, and computers, they also were mindful of the need for less screen time. However, because the switch to mostly internet/online based engagement was sudden, families felt they were not prepared to engage their children otherwise. One participated noted,Although availability of internet provided relief for many families in terms of adapting activities to engage children, it created two main challenges for low-income families, (a) fighting over limited electronic gadgets/devices such as access to phones, tablets, TV, and computers and (b) limited Wi-Fi connectivity.They start snapping at each other, arguing over things they normally wouldn’t argue over, like the Play Station. They would argue over whose turn it was to play on that.” (040). And in many cases, “Just the 10-year-old wanting to be in his older brother’s room or wanting to play his video games and the older brother not wanting to let him play because he’s usually gaming online with other people.” (039) Summing up their feelings over how the sudden and drastic changes due to COVID-19 pandemic had affected their family, participants noted,My children are fighting more, not like they physically fight… “Well, I’m watching this” (on the tablet). That’s a fight every day. Like, I have to minimize the times that the kids use it. Then you don’t want them to be on devices too long so I’m up to the point where taking them and hiding them up under my mattress. You got an 8-year old and you got a 10-year old and you have to work with them and then they fight amongst each other, then they fight with the 16-year old. They drive me insane. (032)It happens a lot when I’m doing something like cooking or cleaning or something my daughter will just randomly start picking with my son for whatever reason, like “Give me the phone” or “Let me watch YouTube” or something like that and then my son gets easily annoyed, then he be like “You’re so annoying. Stop,” or something like that, and then that’s when it’s time to be like “Okay, guys, stop, separate yourselves.” (031)Because of spending a lot of time together with little non-social media or digital leisure activities, children started to pick at each other over little things, “I think that (internet) should be a given during the school year, period, regardless of what’s going on because we send these kids home with tablets or whatever, laptops, but if they can’t get on the internet to access the things what good is having the tablet at home? (039)For some families, inability to have internet at home was a big challenge and parents felt that in unsettling times like during the COVID-19 pandemic when life revolved around internet, such a resource should be provided by government to all for who are not able to afford it. One participant said,Well, my daughter, she gets on Zoom calls with the church so that kind of keeps them connected. The church sent them out face masks and they did like a Zoom face mask session.” (040) For school work, “…. the girls had their electronics so they were able to participate in the Zoom calls that the teachers would do once or twice a week” (037) and “… like my son’s teacher, they did Marco Polo videos where you can record a video to a group and they can see it later and they can record a video and send it back.” (039) Detailing her experience, one of the participants expressed,When school was still in session (from home due to COVID-19) he had one to three sessions four days a week. He was constantly pretty much on Zoom most of the day… If he had needed help outside of his Zoom sessions then, I would help him with that but thankfully they pretty much worked through whatever the assignments were during their sessions so there wasn’t a lot of “teaching” that I needed to do outside of those sessions. (039)Faced with school closures due to COVID-19 global pandemic, the videoconferencing software platform Zoom quickly became the standout resource for schools as they switched to remote classes. Participants acknowledged that having Zoom has helped them and their children stay connected with teachers and church leaders. One participant said, “I feel like my kids were really engaged when the things were coming through their devices, their activities, the things that they could do, the fun stuff, the engagement.” (037) Another parent acknowledged,But the kids, they’ve been playing Roblox. That’s the number one app they’ve been playing. Most of the kids have also been watching YouTube videos. Cocomelon YouTube Video did a billion streams in one week last week. (038)Beyond learning, whether through the schools or church, families engaged their children in technology-based activities such as face time socialization with friends on Zoom and/or Tik-Tok, watching YouTube videos, and playing app-based games on phones or tablets. One participant noted, “I feel like we did good for what we had, like having the kids be a part of the planning process of what our days would look like, keeping them involved, like having our little family meetings, so keeping them involved, the best way we could without scaring or overwhelming them. (037)It was interesting to further observe that parents engaged their children in decision-making processes around how to keep them engaged. Much of the desire to involve children in decision-making stemmed from the fact that parents did not want their children overwhelmed by the sudden and drastic changes. Involving them would ease the frustration of “sinking or swimming” with regards to the sudden changes caused by COVID-19, particularly sheltering in places and going virtual, as pointed out by one participant,My granddaughter will get on the internet one to three days out of a week. She did it with her school and with Grade A Plus. They both got on the internet and the teacher would do activities on the internet on Zoom. (036)Participants also noted the role teachers played in keeping their children engaged while sheltering in place. A parent noted, “They had their homework assignments…the teacher would send her messages, to check on her to see if assignment wasn’t done and stuff like that.” (041). A grandparent also said,This study explored African American families’ experiences with using technology to engage their children during COVID-19 and how that impacted family health. Understanding these experiences and perceptions can aid the development of solutions that address communication and relational challenges at familial level, and strengthen the collaboration between parents, teachers, and students. Based on our analysis, many parents experienced emotional stressors from navigating sudden changes—social distancing, business and school closures, and stay at home mandates. Similar to studies that observed parents’ mixed feelings about online learning—with some feeling more connected to their child’s schoolwork while others felt more burdened —evidenceAfrican American parents already deal with a disproportionate COVID-19 burden and limited access to reliable Wi-Fi. Coping with the challenges of supporting their children in this new learning environment can be stressful to parents. Based on the interviews, parents felt they were placed in a survival mood in which they had to either “sink or swim” with regards to understanding their own limitations with technology and the needs of their children to effectively support them. Prior to the pandemic, parents were tasked with reducing screen time for their kids and involving them in more physical activity . In a paAlthough technology had its challenges, parents appreciated that when well supported , it can improve both the online learning experience for them, their children and teachers. It can also provide opportunities for family engagement activities such as watching You Tube movies and chatting with other friends or family members on Zoom. Parents felt that where teachers engage with their children in regular and meaningful meetings, it was easier for them to support their children as they (parents) worried less about whether their children were finding their assignments or understanding their lesson plan. Despite the challenges, this can also be a great opportunity to educate parents and educators on how to overcome the digital divide. In other words, COVID-19 driven online learning has provided new opportunities  to innovatively engage students, particularly generation Z ,50. ThisFamilies benefit from time together and time apart. However, when resources  are limited, conflict among siblings and between children and parents can occur. This conflict can result in pandemic burnout in which family members become intolerant to each other because of prolonged episodes of sharing space and resources evidenced by the “infighting among children” as they wrestled over access and use of the available electronic gadgets. Even though debates around digital inequities and closing the digital divide are not new ,52, thesAlthough this study is based on a small sample of African American families, it suggests that the U.S. needs to aggressively address the Black/White digital divide, especially to ensure equitable access to academic resources and opportunities for African American communities. In a rapidly digitalizing world, reduced access to these resources can have irreversible long-term consequences for academic, social, and health outcomes. These families need tailored supports to ensure that both their need for and concerns about technology use are addressed, especially as learning through online means gradually becomes the norm. Digital technology needs to become part of the school education system so that technology use and achievement standards among African Americans are elevated. Researchers, community leaders, and local and national governments need to collaborate, especially with technology developers, to create and offer ongoing public educational programs aimed at giving parents and caregivers the technology knowledge and skills they need to remain relevant in a rapidly digitalized world.Given the insights gleaned from this pilot study, there are four main areas that future research can address. First, there is need for community-based participatory research that broadly investigates how and why minority populations continue to be left behind in the digital world. An important issue to address would be how to prevent the digital divide from becoming another social determinant of health. Second, research should also explore strategies to create and sustain digital safety nets for resource limited families, especially African American communities, to strengthen pandemic recovery. Third, research should address digital inclusion, especially identifying how key educational stakeholders  can work with technology companies to provide context-sensitive culturally relevant technologies to promote family engagement and support students’ success in resource-limited communities. Seamans and Bytes (2020) argued for local and regional policy solutions, including policies that allow communities to provide their own broadband or tax breaks to incentivize employers who provide access to their employees, to close the digital divide . Future