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Henry James's "The Papers" (1903) was among the first works of fiction to identify changing conceptions of intimacy brought about by new communication technologies during the late nineteenth century—a time described by James as "the age of interviewing." This essay's consideration of the interview as a model for supposedly intimate conversation reveals how the public's desire to appear in newsprint ultimately poses a far more profound problem in James's fiction than does the relatively straightforward defense of privacy against invasive journalists for which James has been credited. Such readings fail to explain James's attention to precisely those characters most interested in reading about other people's private lives or even in having their own private lives read about by others, a problem best assessed in terms of interpersonal relationships. What "The Papers" designates as "the unspoken" between the two journalists, Maud Blandy and Howard Bight, might instead be taken to express the story's conception of intimacy as a form of speechlessness defined in opposition to the confessional voice of the interview. A number of conversations involving unspoken intimacy suggest that the lesson of "The Papers" is that intimacy with people we do not know is far easier to establish than intimacy with people we do know. [ABSTRACT FROM AUTHOR]

This paper builds on a previous article describing an innovative approach to enhance the service user and practitioner's experience of novel collaborative approach to service improvement. It aims to explore the impact of this through the voices of service users as collaborators and co-authors. The Recovery and Collaborative Care Planning Café (RCCPC) designed with World Café principles, created a safe space to foster inquiry and learning about recovery between service users, carers, and practitioners in an NHS Trust. An important part of the method was in changing conversations towards recovery and living well with conditions applying CHIME concepts (Connectedness, Hope, Identity, Meaning, and Empowerment). Story is a qualitative method known as a well-established effective means of engaging others in sharing experiences and perspectives. Through the stories of service users' experiences participating in the RCCP Cafe, it was clear that they felt that CHIME concepts had a positive impact on the way that their conversations evolved. Accounts of how these conversations had resulted in personal growth and increased connectedness emerged. [ABSTRACT FROM AUTHOR]

Purpose: Children's perspectives in the context of health service delivery have historically been seen as unimportant. They have been viewed as unintelligent, unable to effectively share or tell of their experiences or fully participate in their care, potentially resulting in a sense of dehumanisation. Method: The present paper illustrates children's experiences when undergoing medical procedures, using application of the eight dimensions of humanised care theoretical framework. Results: Findings from six published papers were reflectively interrogated to identify implicit findings related to the dimensions of humanised care. These implicit findings show ways of caring for childrenwhichcan lead to enhanced human sensitivity in care or conversely where the dimensions of being human are obscured to greater or lesser degrees and can result in forms of dehumanisation. Conclusions: Inadvertent dehumanising features of practice can be mediated by encouraging the inclusion of children's own lifeworld perspective and make room for their voices in both care and research. In this way the present well documented power imbalance could be addressed. Adding the value of the theoretical framework highlights areas of need for young children to be cared for as human beings. [ABSTRACT FROM AUTHOR]

Background: Low- and middle-income countries (LMICs), including South Africa, are currently experiencing multiple epidemics: HIV and the rising burden of non-communicable diseases (NCDs), leading to different patterns of multimorbidity (the occurrence of two or more chronic conditions) than experienced in high income settings. These adversely affect health outcomes, increase patients' perceived burden of treatment, and impact the workload of self-management. This paper outlines the methods used in a qualitative study exploring burden of treatment among people living with HIV/NCD multimorbidity in South Africa. Methods: We undertook a comparative qualitative study to examine the interaction between individuals' treatment burden (self-management workload) and their capacity to take on this workload, using the dual lenses of Burden of Treatment Theory (BoTT) and Cumulative Complexity Model (CuCoM) to aid conceptualisation of the data. We interviewed 30 people with multimorbidity and 16 carers in rural Eastern Cape and urban Cape Town between February-April 2021. Data was analysed through framework analysis. Findings: This paper discusses the methodological procedures considered when conducting qualitative research among people with multimorbidity in low-income settings in South Africa. We highlight the decisions made when developing the research design, recruiting participants, and selecting field-sites. We also explore data analysis processes and reflect on the positionality of the research project and researchers. Conclusion: This paper illustrates the decision-making processes conducting this qualitative research and may be helpful in informing future research aiming to qualitatively investigate treatment burden among patients in LMICs. [ABSTRACT FROM AUTHOR]

The INDDEX24 Dietary Assessment Platform (INDDEX24) was developed to facilitate the collection of 24-h dietary recall (24HR) data. Alongside validation studies in Viet Nam and Burkina Faso in 2019–2020, we conducted activity-based costing studies to estimate the cost of conducting a 24HR among women of reproductive age using INDDEX24 compared with the pen-and-paper interview (PAPI) approach. We also modelled alternative scenarios in which: (1) 25–75 % of dietary reference data were borrowed from the INDDEX24 Global Food Matters Database (FMDB); (2) all study personnel were locally based and (3) national-scale surveys. In the primary analysis, in Viet Nam, the 24HR cost US $111 004 ($755/respondent, n 147) using INDDEX24 and $120 483 ($820/respondent, n 147) using PAPI. In Burkina Faso, the 24HR cost $78 105 ($539/respondent, n 145) using INDDEX24 and $79 465 ($544/respondent, n 146) using PAPI. In modelled scenarios, borrowing dietary reference data from the FMDB decreased the cost of INDDEX24 by 17–34 % (Viet Nam) and 5–15 % (Burkina Faso). With all locally based personnel, INDDEX24 cost more than PAPI ($498 v. $448 per respondent in Viet Nam and $456 v. $410 in Burkina Faso). However, at national scales (n 4376, Viet Nam; n 6500, Burkina Faso) using all locally based personnel, INDDEX24 was more cost-efficient ($109 v. $137 per respondent in Viet Nam and $123 v. $148 in Burkina Faso). In two countries and under most circumstances, INDDEX24 was less expensive than PAPI. Higher INDDEX24 survey preparation costs (including purchasing equipment) were more than offset by higher PAPI data entry, cleaning and processing costs. INDDEX24 may facilitate cost-efficient dietary data collection. [ABSTRACT FROM AUTHOR]

Background: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic. Methods: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis. Results: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines. Conclusions: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need. [ABSTRACT FROM AUTHOR]

Effective nutrition policies require timely, accurate individual dietary consumption data; collection of such information has been hampered by cost and complexity of dietary surveys and lag in producing results. The objective of this work was to assess accuracy and cost-effectiveness of a streamlined, tablet-based dietary data collection platform for 24-hour individual dietary recalls (24HR) administered using INDDEX24 platform v. a pen-and-paper interview(PAPI) questionnaire, with weighed food record (WFR) as a benchmark. This cross-sectional comparative study included women 18–49 years old from rural Burkina Faso (n 116 INDDEX24; n 115 PAPI). A WFR was conducted; the following day, a 24HR was administered by different interviewers. Food consumption data were converted into nutrient intakes. Validity of 24HR estimates of nutrient and food group consumption was based on comparison with WFR using equivalence tests (group level) and percentages of participants within ranges of percentage error (individual level). Both modalities performed comparably estimating consumption of macro- and micronutrients, food groups and quantities (modalities' divergence from WFR not significantly different). Accuracy of both modalities was acceptable (equivalence to WFR significant at P < 0·05) at group level for macronutrients, less so for micronutrients and individual-level consumption (percentage within ±20 % for WFR, 17–45 % for macronutrients, 5–17 % for micronutrients). INDDEX24 was more cost-effective than PAPI based on superior accuracy of a composite nutrient intake measure (but not gram amount or item count) due to lower time and personnel costs. INDDEX24 for 24HR dietary surveys linked to dietary reference data shows comparable accuracy to PAPI at lower cost. [ABSTRACT FROM AUTHOR]

Introduction: A proper understanding of study design is essential to creating successful studies. This is also important when reading or peer reviewing publications. In this article, we aimed to identify and summarize key papers that would be helpful for faculty members interested in learning more about study design in medical education research. Methods: The online discussions of the 2016-2017 Academic Life in Emergency Medicine Faculty Incubator program included a robust and vigorous discussion about education study design, which highlighted a number of papers on that topic. We augmented this list of papers with further suggestions by expert mentors. Via this process, we created a list of 29 papers in total on the topic of medical education study design. After gathering these papers, our authorship group engaged in a modified Delphi approach to build consensus on the papers that were most valuable for the understanding of proper study design in medical education. Results: We selected the top five most highly rated papers on the topic domain of study design as determined by our study group. We subsequently summarized these papers with respect to their relevance to junior faculty members and to faculty developers. Conclusion: This article summarizes five key papers addressing study design in medical education with discussions and applications for junior faculty members and faculty developers. These papers provide a basis upon which junior faculty members might build for developing and analyzing studies. [ABSTRACT FROM AUTHOR]

Background: Working together and co‐production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. Objective: A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. Methods: Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four‐dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. Results: Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. Conclusion: Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. Patient and Public Involvement: Two public advisors were involved throughout the 3 years of this doctoral research. They co‐evaluated this involvement and are co‐authors of this paper. [ABSTRACT FROM AUTHOR]

Background: Validated Internet-based screening tools for cannabis use and abuse are needed. The present study aimed to establish equivalence between the previously validated Alcohol, Smoking and Substance Involvement Screening Test (ASSIST) as a paper-and-pencil (PaP)-administered questionnaire and its online use. Methods: Two groups of cannabis users took part in this study and the results were analyzed using structural equation modeling. One group consisted of 150 participants and was assessed with the ASSIST PaP questionnaire in a face-to-face interview (the PaP group). They were recruited from three settings: a primary health care outpatient clinic, a general psychiatric facility, and an ambulatory specialized addiction treatment facility. The other group (the Web group) comprised 1382 persons who answered the online version of the same questionnaire. This sample was drawn from people who naturalistically visited a website dedicated to helping people with cannabis addiction. Results: The internal consistency was good for the online questionnaire (0.74) and high for the already validated PaP questionnaire (0.91). The Web group, however, had higher scores on cannabis use than did the PaP group. The results show support for configural invariance, meaning that the one-factor structure was preserved across groups, although measurement equivalence between these two survey modes was not achieved. However, when the Web group was split into two random subsamples, measurement invariance was demonstrated between them by cross-validation. Conclusions: Measurement equivalence was not achieved between the two survey modes. Nonetheless, subanalyses of the Web group demonstrated that the cannabis screening questions of the ASSIST can be used for online screening. Differences in ASSIST scores between samples may be due to the sensitive nature of the information surveyed, with possible underreporting in face-to-face interviews, or to the different characteristics of the Web group because of the specialized nature of the website. [ABSTRACT FROM AUTHOR]

Purpose: Despite a known risk of cellulitis recurrence, the management of the wider impact and risk factors has been neglected. The innovative National Cellulitis Improvement Programme (NCIP) addresses this by providing evidence-based and individualised care to improve patient reported outcomes and reduce the risk of recurrence. The aim of this paper is to examine the longer-term impact of cellulitis and to identify a suitable and clinically relevant Patient Reported Outcome Measure (PROM). Methods: A review of existing cellulitis-specific PROMs was undertaken, alongside literature detailing the patient-focused impact of cellulitis, to identify a suitable PROM for clinical use. A group of expert therapists and patient representatives (n = 14) shared their individual and collective experiences over a series of events to discuss and debate the impact of cellulitis and review available PROMs. CELLUPROM© is introduced with anonymised PROM data and case study information reported to establish the impact of CELLUPROM© within usual NCIP care. Results: No cellulitis-specific PROMs were identified. Literature focused on the signs and symptoms of an acute episode of cellulitis, with outcome measures primarily used to evidence the impact of an intervention. An enduring physical, social and emotional impact of cellulitis was identified in this study, providing the basis for the new cellulitis-specific PROM (CELLUPROM©), which has been implemented with good effect in clinical care. Conclusion: This study has highlighted the lasting impact of cellulitis. Using CELLUPROM© within the risk-reduction NCIP has helped develop Value-Based Healthcare and support programme evaluation. [ABSTRACT FROM AUTHOR]

Background: Mindfulness meditation is ubiquitous in health care, education, and communities at large. Mindfulness-Based Interventions (MBIs) are the focus of hundreds of NIH-funded trials given the myriad health benefits associated with this practice across multiple populations. Notwithstanding, significant gaps exist in how mindfulness concepts are measured using currently available self-report instruments. Due to the number of available mindfulness measurement tools, each measuring different aspects, it is difficult to determine the extent to which individuals develop comparable mindfulness skills and attitudes and which health benefits can be attributed to which gains in mindfulness. The Patient-Reported Outcomes Measurement Information System (Puerto RicoOMIS®) has established a rigorous instrument development methodology to create brief, precise, and clinically relevant outcomes tools. Objective: This is the first of 4 papers representing an NCCIH-funded initiative (R01AT009539), which has applied Puerto RicoOMIS® instrument development methodologies to mindfulness measurement to improve the rigor, relevance, and reproducibility of MBI research results. Methods/Results: This introductory paper sets the stage for why improved mindfulness measurement tools are needed and briefly describes the Puerto RicoOMIS® development approach. The second 2 papers highlight results from a national survey, focus groups, and expert interviews to identify and organize relevant mindfulness concepts, domains, and items for eventual item bank creation. The fourth paper reviews the item writing and development process of these new instruments, including results from stakeholder cognitive interviews and a translatability review. Conclusion: Together these papers feature the rigorous development approach, rationale, logic, and significance that supports the development, calibration, and validation of new Puerto RicoOMIS® measures of mindfulness and related concepts. [ABSTRACT FROM AUTHOR]

Background: The aim of the research is to shed light on the experiences of a group of nursing students enrolled in a yoga elective course who practiced yoga regularly for 14 weeks, regarding yoga and the phenomenon of doing yoga, with a qualitative approach. Methods: This qualitative study was conducted at a public university in Izmir, Turkey. The study sample consisted of 61 students enrolled in the 1st-year yoga course at the Department of Nursing, Faculty of Health Sciences. Except for two students, 59 of them participated in the study. Participants attended a face-to-face yoga course once a week for 1.5 h over a 14-week period. Each session comprised 30 min of theoretical instruction and 60 min of practice. In data collection, an interview form containing five questions was used to understand nursing students' experiences and thoughts about practicing yoga. In addition, A4 sized papers in different colors were presented to the participants. The participants were asked to draw and/or cut a shape by choosing the paper in the color that most evokes yoga. Then they were asked to explain why they chose this color and why they drew this shape. Participants were given one hour. After the data were collected, the pictures drawn by the participants and their descriptions of their drawings were transferred to the computer and included in the analysis. Qualitative data were hand-coded by the researchers. Within in-vivo coding, code names were formed from the participants' expressions. The findings analyzed by content analysis were interpreted with the literature under the themes by presenting quotations. Results: It was determined that the participants used nature figures (sun, cloud, tree, sky, flower) (f = 75), people doing yoga (f = 12), and sound, light and other figures (bird sound, wave sound, candle, light bulb, traffic light, heart, eye, left key, peace, swing, India, circle, etc.) (f = 29) in the shapes they drew and cut out on A4 sized papers in different colors to describe their experiences and thoughts about practicing yoga. The participants mostly chose blue-green-yellow colors (n = 41). With qualitative question analysis, a list of codes was created from the answers given by the students to the questions for the phenomenon of "doing yoga" (number of codes = 98). After the analysis of the data, four categories were reached. The category names and frequency numbers explaining the phenomenon of practicing yoga were distributed as "symbol of health and serenity (f = 345)", "the way to place goodness in your heart (f = 110)", "the most effective way to meet the self (f = 93)" and "no guarantee of relaxation (f = 71)", respectively. Conclusions: The results indicate that yoga is perceived by nursing students as a multifaceted practice that evokes a range of emotional and physical responses. Most participants associate yoga with symbols of health, serenity, and self-awareness, often using natural elements and blue-green-yellow the colors to represent these feelings. However, there is also recognition that yoga may not guarantee relaxation for everyone, as some students reported difficulties in meditation, physical discomfort, and challenges in focusing. The study highlights the variability in how individuals experience yoga, emphasizing both its positive effects on well-being and the potential challenges in practice. These findings suggest that while yoga is widely valued for its calming and health-promoting benefits, it may not be universally effective in achieving relaxation or mindfulness. [ABSTRACT FROM AUTHOR]

Objectives: Virtual fellowship interviews were widely utilized during the COVID-19 pandemic. Little is published at this time about the preferences of applicants of orthopaedic surgery sports medicine fellowship positions regarding in-person versus virtual interviews. The purpose of this study is to determine the applicant cost-benefit willingness for both in-person and virtual interviews, assess the ability to learn about a program in a virtual setting, and to gauge the opinions of applicants on their preferences for in-person or virtual interviews. Methods: An online survey was distributed to all orthopaedic sports medicine applicants for the 2022-2023 match cycle through the American Orthopaedic Society for Sports Medicine (AOSSM). Statistical analysis was performed using descriptive statistics. Results: Forty-five surveys were completed. Respondents had a mean age of 31.49 years (±2.49) with 38 (84.4%) identifying as male and 7 (15.6%) as female. Most applicants applied to between 31-40 (26.7%) or 21-30 programs (22.2%), while attending between 11-15 interviews (44.4%). 51.1% of applicants stated that ~25% of their interviews were virtual format, with 15.6% of all applicants attending over 50% of interviews in the virtual format. Most applicants spent between $2,500-$5,000 (35.7%) or $5,000-$7,500 (26.7%) on interviews. Applicants stated they would feel most comfortable spending between $2,500-$5,000 (46.7%) or $5,000-$7,500 (26.7%). 36.4% of applicants stated they completed less in-person interviews due to cost, and 52.3% said they would have completed less interviews overall if there was no virtual option. 68.2% of applicants stated distance traveled was irrelevant when electing to attend an interview virtually. When comparing in-person vs virtual interviews, applicants either strongly agreed or agreed that in-person interviews allowed them to better represent themselves (95.6% vs 44.4%), assess right "fit" (95.6% vs 28.9%) and sufficiently formulate a rank list (93.2% vs 40%) compared to virtual interviews. Conclusions: Fellowship applicants had strong preferences for in-person interviews in the orthopaedic surgery sports medicine fellowship match. Cost was a limiting factor in declining in-person interviews and most applicants attended more interviews due to virtual formats. Applicants did not feel that virtual interviews were sufficient for creating accurate rank lists. [ABSTRACT FROM AUTHOR]

Purpose: Most patient-reported outcome (PROs) used in thrombosis research and clinical practice are delivered using technology like online questionnaires. However, only few have undergone formal electronic adaptation from paper to digital versions, threatening the validity and reliability of the PROs. The present study aimed to perform an electronic adaption and cross-cultural translation of two PROs measuring health-related quality of life in a Danish cohort of patients with venous thrombosis (VTE), specifically the VEINES-QoL/Sym questionnaire and the PEmb-QoL questionnaire. Methods: The electronic adaption and cross-cultural translation processes followed the international guidelines recommended by ISPOR. The migration of the questionnaires from paper to electronic versions was conducted in the Research Electronic Data Capture (REDCap). Following approval of the electronically adapted and translated versions, a pretest of the questionnaires was performed by cognitive interviewing patients with VTE recruited from a hospital setting. Results: Nine men and ten women between the age of 19 and 73 years participated in cognitive interviews. The questionnaires were successfully adapted from paper to electronic versions, and during the migration process only a few modifications to the content and format were made. Most comments were related to technicalities, e.g. touch functions and checkboxes. The cross-cultural translation of both questionnaires was satisfactory, as only minor rephrasing was required. Conclusions: The original and Danish version of VEINES-QoL/Sym and PEmb-QoL were successfully adapted into electronic versions and are ready to share for REDCap users. Furthermore, the Danish versions of the two questionnaires have shown satisfactory face validity. [ABSTRACT FROM AUTHOR]

This paper focuses on the uncertainty and resentment that many persons with disabilities feel concerning their disability services in the welfare state of Finland. This paper elaborates on the theme through the lived citizenship of persons with disabilities using the key theory of disability tax as an analytical tool. The empirical data were collected through an online survey (n = 541) and six group interviews (n = 41) of persons with disabilities in 2023. The disability tax experiences are elaborated through four aspects: (1) rejected applications, (2) uncertain realisation, (3) laborious complaint mechanisms, and (4) the psycho–emotional effect. The findings of this study establish collective experiences of multi-layered disability tax throughout the disability services process. It concludes that disability services, which were originally planned to specifically ensure equal opportunities to participate in society for persons with disabilities, are increasingly becoming the very sources of burden as austerity has silently grown deeper over recent years and has become the clear policy of the current government. [ABSTRACT FROM AUTHOR]

Workarounds are commonplace in healthcare settings. An increase in the use of electronic health records has led to an escalation of workarounds as healthcare professionals cope with systems which are inadequate for their needs. Closely related to this, the documentation of vital signs in electronic health records has been problematic. The accuracy and completeness of vital sign documentation has a direct impact on the recognition of deterioration in a patient’s condition. We examined workflow processes to identify workarounds related to vital signs in a 372-bed hospital in Sweden. In three clinical areas, a qualitative study was performed with data collected during observations and interviews and analysed through thematic content analysis. We identified paper workarounds in the form of handwritten notes and a total of eight pre-printed paper observation charts. Our results suggested that nurses created workarounds to allow a smooth workflow and ensure patients safety. [ABSTRACT FROM AUTHOR]

This article focuses on how do people respond when they are cut off from one of their regular sources of news. In this article it reports reactions of New Yorkers to the newspaper strike of December 1958. The sample used by Bernard Berelson of Columbia's Bureau of Applied Social Research was broadened to include all five boroughs of New York City plus Long Island and Connecticut suburbs. Interviewing areas were selected to reflect the ethnic and economic characteristics of the metropolitan area. Detailed interviews were accomplished with a total of 164 persons who affirmed that they ordinarily read a New York City daily newspaper regularly. Large-circulation New York newspapers have less "community" flavor than the dailies in most American cities. Local news in New York encompasses a vast scene, remote from most newspaper readers' personal experience. Except for newspapers, the tremendous communications apparatus of the metropolitan area continued to function during the strike. Thus it is remarkable that metropolitan New Yorkers missed the papers as much as they did.

Background: This paper evaluates the introduction of ten Community Health and Well-being Workers (CHWW) in four pilot sites across Cornwall. The period evaluated was from the initial start in June 2022 until June 2023, covering the project setup and implementation across a range of Primary Care Networks (PCNs) and Voluntary sector partners (VSCO). Methods: All ten CHWWs and their managers at each site were interviewed (n = 16) to understand the barriers and enablers to implementation and wider learning that could be captured around the project setup. Qualitative methods were used for data collection, including semi-structured interviews and focus groups. Transcripts were thematically analysed for cross-cutting themes, as well as site-specific effects. Results: In terms of learning, we cover the following key areas, which were of most importance to the successful implementation of the pilot: The CHWWs were introduced into an already established, successful social prescribing (SP) system by the time the CHWW project began. CHWWs can access some of the same training and office space as SPs, with overlapping meeting schedules allowing them joint input on some topics. It seemed that all the pre-work in terms of relationships and learning about a similar role helped a rapid implementation. Each site's CHWW management structure uses the same line management as the SPs. Roles were clustered together to remove duplication, maximise coverage and triaging of residents. The largest barrier to overcome was integrating VSCO staff into NHS systems. Conversely, hosting CHWWs within an NHS organisation has pros and cons, namely better access to NHS data and staff, but longer lead-in time for registration on systems, and more bureaucracy for procurement/spend. Conclusions: Looking to the future, the pilot's success has spread the programme to other integrated care areas in the country, with ongoing plans for further rollout and evaluation in the coming years. [ABSTRACT FROM AUTHOR]

Background: The World Health Organization Astana Declaration of 2018 sees primary healthcare as key to universal health coverage and gives further support to the goal of building sustainable models of community palliative care. Yet evaluating the benefits of such models continues to pose methodological and conceptual challenges. Objective: To explore evaluation issues associated with a community-based palliative care approach in Kerala, India. Design: An illuminative case study using a rapid evaluation methodology. Methodology: Qualitative interviews, documentary analysis and observations of home care and community organising. Results: We appraise a community palliative care programme in Kerala, India, using three linked 'canvases' of enquiry: (1) 'complex' multi-factorial community-based interventions and implications for evaluation; (2) 'axiological' orientations that foreground values in any evaluation process and (3) the status of evaluative evidence in postcolonial contexts. Three values underpinning the care process were significant: heterogeneity, voice and decentralisation. We identify 'objects of interest' related to first-, second- and third-order outcomes: (1) individuals and organisations; (2) unintended targets outside the core domain and (3) indirect, distal effects within and outside the domain. Conclusion: We show how evaluation of palliative care in complex community circumstances can be successfully accomplished when attending to the significance of community care values. Plain language summary: Where are the values in evaluating palliative care? Learning from community-based palliative care provision The evaluation of any intervention or service will inevitably involve a series of decisions on what we measure, what criteria we use to judge whether the intervention has been successful (or not), what type of data we actually collect and what methods we use to do this. When evaluating a range of palliative care interventions, we suggest that these decisions have often been taken in a concealed way and tend to favour relatively narrow quantitative measures linked to end outcomes. Our paper reports on the evaluation of a community-based palliative care intervention on Kerala, India. In it, we suggest that such complex work requires a broader approach to evaluation that: makes the values being used to assess success explicit; draws on a range of data types; is interested in delivery processes; and places the voices of participants at the heart of the assessment. The paper concludes with some broader observations on how these principles might be applied more widely within palliative care. [ABSTRACT FROM AUTHOR]

Background: Menstruators facing period poverty often struggle with menstrual hygiene and waste management, which can result in harmful short- and long-term health outcomes such as urinary tract infections, yeast infections, and vulvar contact dermatitis. Research indicates that 42% of menstruators in the United States have difficulty affording period products. Traditional methods of distributing period products through social services may unintentionally undermine menstruators' agency, leading to disempowerment and inefficient resource allocation. Period product pantries are a novel approach aimed at addressing period poverty, inequity, and inadequate menstrual health education in the United States. Objectives: This paper aims to examine the development, organization, and implementation of two distinct period product pantry networks in Ohio and New York. It seeks to compare the advantages and challenges of grassroots versus nonprofit-led models and to provide practical insights for future pantry operators. Design: The study examines two models of period product pantries: a grassroots effort led by three local residents in Ohio and an initiative spearheaded by a nonprofit organization in New York. The design includes a comparative analysis of both models' organization, funding methods, and operational structures. Methods: The authors gathered data on the construction, operation, and usage of two pantry networks, focusing on factors such as accessibility, community engagement, and sustainability. The study employed a combination of qualitative methods, including interviews with organizers, and a review of organizational documents to analyze the effectiveness and scalability of each model. Results: Both pantry networks increased accessibility to period products in low socioeconomic neighborhoods, which are disproportionately affected by period poverty. The grassroots model, while resource-limited, fostered strong community ties and local engagement. The nonprofit-led model benefited from dedicated staff and a more stable funding structure but faced bureaucratic challenges. Despite their differences, both models demonstrated the potential to empower menstruators by preserving their dignity and autonomy. Conclusions: Period product pantries represent an innovative and equitable approach to addressing period poverty and inequity. The analysis of the two models offers valuable insights for organizations and individuals interested in establishing similar initiatives. While each model has its unique benefits and challenges, both are effective in empowering menstruators and providing accessible menstrual hygiene products to those in need. Registration: Not applicable. Plain language summary: Fighting for menstrual equity through period product pantries Period product pantries are a new way to help people who can't afford period products and don't have enough education about menstrual health in the U.S. Many people who experience period poverty, or trouble getting products like pads and tampons, also face barriers to staying clean and managing period waste. This can cause health issues like infections. About 42% of people who get periods in the U.S. say they've had trouble paying for these products. Period product pantries are different from older methods of getting free products, like through social services, because they let people get what they need without feeling embarrassed or losing their sense of control. This paper looks at two types of period pantries: one started by three local people in Ohio and another run by a nonprofit group in New York. Both help people in neighborhoods where it's hard to afford period products. The paper talks about how these pantries were set up, how they are funded, and what worked well or didn't. The goal is to show how these pantries can be a good, fair way to help people while giving advice to others who might want to start their own pantries. [ABSTRACT FROM AUTHOR]

Context: Previous research on athletic trainers' (ATs) documentation practices in the secondary school setting has focused on users of 1 electronic medical record (EMR) platform. These studies have identified that ATs use multiple platforms for documentation, including paper, even when an EMR is available. Objective: To examine the documentation practices of ATs who use various forms of patient care documentation, including paper, EMRs, or both. Design: Qualitative study. Setting: Individual telephone interviews. Patients or Other Participants: Twenty ATs participated in this study: 12 women and 8 men who averaged 38 ± 14 years of age, 15 ± 13 years of clinical experience, and 11 ± 11 years of employment at their current secondary school. Data Collection and Analysis: Semistructured telephone interviews were conducted to gain insight into ATs' documentation practices. Three researchers and 2 auditors inductively coded the transcripts using a consensual qualitative research process that consisted of 4 rounds of consensus coding and determination of data saturation. Trustworthiness was addressed with member checking, multiple-analyst triangulation, and peer review. Results: The ATs' documentation practices were largely influenced by technology, organized in 3 themes. Participants' current documentation strategies included the use of both paper and EMRs, as they found different benefits to using each platform. Oftentimes documentation practices were shaped by technological challenges, including unreliable networks, software design problems, and the lack of a streamlined approach. Lastly, participants identified future strategies for improving documentation, including the need for better EMR options and streamlining their individual documentation behaviors. Conclusions: Many ATs wanted to incorporate EMRs in their clinical practice but faced challenges when attempting to do so. In turn, clinicians often duplicated documentation or used 2 platforms. Athletic trainers should communicate with administrators to select an EMR that fits their documentation needs and seek resources, such as network access and educational opportunities, to learn how to use EMRs. [ABSTRACT FROM AUTHOR]

Background: The development of a set of questions is a central element of examination development, with the validity of an examination resting to a large extent on the quality of the questions that it comprises. This paper reports on the methods and findings of a project that explores how educational examination question writers engage in the practice of question setting. Although the practice of examination question writing is ubiquitous, limited research has been carried out on how writers actually draft individual examination questions when writing complete examination papers. Purpose: The main aim of this study was to understand more deeply the process of examination question writing. Sample: The study involved 12 experienced educational examination question writers. Design and methods: The first data collection phase involved observing writers whilst they wrote the first draft of a question paper (using a 'think aloud' process). Following the observation, the writers took part in an hour-long interview. This led to the construction of a model of question writing. Phase 2 of the data collection process involved validating the proposed question writing model with six additional question writers by means of telephone interviews. Analysis and findings: A model was developed that outlined the key stages of writing that all of the writers moved through in the completion of their question writing task. The question writing model situates the process of writing individual questions in relation to the broader cognitive tasks required in writing a complete paper. It also situates the writing process within the social dimensions of question writing. Conclusions: Iteration in the writing process appears to have an important function. These iterations represent a form of decision-making that is common to the examination question writing culture and appears to be logical and rule bound. Whilst the recognition of iterative behaviour reveals a highly personalised element of question writing, it also reveals a common expectation that the ideas across a subject area are highly inter-related, and that an examination paper should reflect this. [ABSTRACT FROM AUTHOR]

To prevent regulation from becoming an obstacle to healthcare technological innovation, regulation should evolve as new healthcare technologies are developed. Although regulation is closely related to healthcare technology development, there are few studies that view healthcare technological advances from the multi-layered perspective of papers, patents, and clinical research and link this with regulatory evolution. Therefore, this study tried to develop a new method from a multi-layer perspective and draw regulatory implications based on it. This study applied this method to intraocular lens (IOLs) for cataract treatment and detected four major healthcare technologies and two recent healthcare technologies. Moreover, it discussed how current regulations evaluate these technologies. The findings provide implications for healthcare technological advances and the evolutionary direction of regulation through the example of IOLs for cataract treatment. This study contributes to the development of theoretical methods for co-evolution with regulations based on healthcare technology innovation. [ABSTRACT FROM AUTHOR]

Objectives: To synthesize the findings of cognitive interview and usability studies performed to assess the measurement equivalence of patient-reported outcome (PRO) instruments migrated from paper to electronic formats (ePRO), and make recommendations regarding future migration validation requirements and ePRO design best practice.Methods: We synthesized findings from all cognitive interview and usability studies performed by a contract research organization between 2012 and 2015: 53 studies comprising 68 unique instruments and 101 instrument evaluations. We summarized study findings to make recommendations for best practice and future validation requirements.Results: Five studies (9%) identified minor findings during cognitive interview that may possibly affect instrument measurement properties. All findings could be addressed by application of ePRO best practice, such as eliminating scrolling, ensuring appropriate font size, ensuring suitable thickness of visual analogue scale lines, and providing suitable instructions. Similarly, regarding solution usability, 49 of the 53 studies (92%) recommended no changes in display clarity, navigation, operation, and completion without help. Reported usability findings could be eliminated by following good product design such as the size, location, and responsiveness of navigation buttons.Conclusions: With the benefit of accumulating evidence, it is possible to relax the need to routinely conduct cognitive interview and usability studies when implementing minor changes during instrument migration. Application of design best practice and selecting vendor solutions with good user interface and user experience properties that have been assessed in a representative group may enable many instrument migrations to be accepted without formal validation studies by instead conducting a structured expert screen review. [ABSTRACT FROM AUTHOR]

The movement from regular lexicon to onomasticon, especially anthroponomasticon, is often mediated by cultural principles which may determine which concepts could normally be selected for the formation of personal names. Restrictive traditions have guiding principles making some concepts acceptable or not, and some names central or peripheral. In this paper, I discuss the principle of commemorability as gatekeeping the selection of concepts for the formation of personal names in Akan; and, having established the restrictiveness of the Akan anthroponomastic system, I identify the two considerations of honourability and preservability as making up the commemorability principle. The study is inductive, establishing the theory that explains the principles for the selection of appropriate concepts for the construction of personal names, and it relies on ethnographic resources including observation, interviews, and focus group discussions supported by name content analysis to generate the theory. The paper establishes that commemorability is founded on a general philosophy that upholds the societal, effort and perseverance, and social cognitive value in the selection of concepts for constructing personal names. Guided by these considerations, concepts are placed within a value ranking system to determine their 'commemorability', with items that rank as 'honourable' normally selected and processed as personal names. In the construction itself, there is a preference for the cognitive over the physical and the general beyond the specific, and there is an overriding preference for the use of general commemorability concepts which represent excellence, prominence, fullness, abundance, inexhaustibility, strength, endurance, and resilience, among others, which are used both as base-concepts for family names or as 'amplifier' concepts in the construction of extension names. [ABSTRACT FROM AUTHOR]

Introduction: Social Prescribing has an established recognition regarding the benefits provided to the health-related social needs of adults, but little is known about how the intervention addresses young people's needs. There is optimism regarding the central role of two core mechanisms that allows social prescribing to be effective, such as the empathetic role of Link Workers and the connection with community resources. This paper aims to describe the role played by Link Workers working a Social Prescribing intervention targeting young people. Description: This paper adopts a case study methodology to describe the role of Link Workers addressing young people's needs and implementing Social Prescribing scheme in Sheffield (UK). Data were collected through semi-structured interviews with four of the seven link workers of one organisation based in Sheffield. Data were analysed through an inductive approach for emerging themes. Discussion: We provided a description of the profiles and background of Link Workers and described the three models of referral pathways into the intervention. The paper also shows how Link Workers identify young people's needs and how they connect with the community. Conclusion: Based on the insights and the internationally accepted definition of Social Prescribing, we provide a visual representation of the Social Prescribing model and discuss challenges. The paper highlights lessons learned and future directions regarding the role of Link Workers from the case study. [ABSTRACT FROM AUTHOR]

Research on the Leave No One Behind principle of the Sustainable Development Goals (SDGs) within the context of the Agenda 2030 is currently prevalent; however, research on monitoring child poverty at the sub-national (local) level is still limited. This paper addresses this gap by examining indicators developed for monitoring the phenomenon at different territorial levels (global, European, and national) and assessing their territorial transposition locally, using the city of Cadiz, Spain, as a case study. Interviews with local stakeholders reveal that despite the availability and access to related indicators and data, relevant actors must enhance their efforts to utilize such indicators effectively. Based on desktop research and qualitative analysis, the paper delivers recommendations for improving local monitoring of child poverty in Europe and inducing policy changes. This knowledge can inform targeted interventions, policy formulation, and resource allocation to tackle child poverty and promote equitable and inclusive societies. [ABSTRACT FROM AUTHOR]

In this paper, we present findings from a three-year research project funded by the US Institute of Museum and Library Services that examined how advanced broadband measurement capabilities can support the infrastructure and services needed to respond to the digital demands of public library users across the US. Previous studies have identified the ongoing broadband challenges of public libraries while also highlighting the increasing digital expectations of their patrons. However, few large-scale research efforts have collected automated, longitudinal measurement data on library broadband speeds and quality of service at a local, granular level inside public libraries over time, including when buildings are closed. This research seeks to address this gap in the literature through the following research question: How can public libraries utilize broadband measurement tools to develop a better understanding of the broadband speeds and quality of service that public libraries receive? In response, quantitative measurement data were gathered from an open-source broadband measurement system that was both developed for the research and deployed at 30 public libraries across the US. Findings from our analysis of the data revealed that Ookla measurements over time can confirm when the library's internet connection matches expected service levels and when they do not. When measurements are not consistent with expected service levels, libraries can observe the differences and correlate this with additional local information about the causes. Ongoing measurements conducted by the library enable local control and monitoring of this vital service and support critique and interrogation of the differences between internet measurement platforms. In addition, we learned that speed tests are useful for examining these trends but are only a small part of assessing an internet connection and how well it can be used for specific purposes. These findings have implications for state library agencies and federal policymakers interested in having access to data on observed versus advertised speeds and quality of service of public library broadband connections nationwide. [ABSTRACT FROM AUTHOR]

A list of acquired artists' materials including interviews, papers, and records in the U.S. is presented. They include Joyce Anderson Interview, Miriam Beerman Papers, ca. 1945-2005 donated by Miriam Beerman, Mary Butler Papers, 1995-1946 donated by Rachel Armstrong and Mary Butler, Esther Robles Gallery Records, 1947-1986 donated by Robert Robles.

Background: Data entry at the point of collection using mobile electronic devices may make data-handling processes more efficient and cost-effective, but there is little literature to document and quantify gains, especially for longitudinal surveillance systems. Objective: To examine the potential of mobile electronic devices compared with paper-based tools in health data collection. Methods: Using data from 961 households from the Rufiji Household and Demographic Survey in Tanzania, the quality and costs of data collected on paper forms and electronic devices were compared. We also documented, using qualitative approaches, field workers, whom we called ‘enumerators’, and households’ members on the use of both methods. Existing administrative records were combined with logistics expenditure measured directly from comparison households to approximate annual costs per 1,000 households surveyed. Results: Errors were detected in 17% (166) of households for the paper records and 2% (15) for the electronic records (p < 0.001). There were differences in the types of errors (p = 0.03). Of the errors occurring, a higher proportion were due to accuracy in paper surveys (79%, 95% CI: 72%, 86%) compared with electronic surveys (58%, 95% CI: 29%, 87%). Errors in electronic surveys were more likely to be related to completeness (32%, 95% CI 12%, 56%) than in paper surveys (11%, 95% CI: 7%, 17%).The median duration of the interviews (‘enumeration’), per household was 9.4 minutes (90% central range 6.4, 12.2) for paper and 8.3 (6.1, 12.0) for electronic surveys (p = 0.001). Surveys using electronic tools, compared with paper-based tools, were less costly by 28% for recurrent and 19% for total costs. Although there were technical problems with electronic devices, there was good acceptance of both methods by enumerators and members of the community. Conclusions: Our findings support the use of mobile electronic devices for large-scale longitudinal surveys in resource-limited settings. [ABSTRACT FROM PUBLISHER]

A list of acquired artists' materials including papers, records, and interviews in the U.S. is presented. They include Anneberg Gallery Records, 1966-1981 donated by Craig Anneberg, Anne Ayres Papers, 1972-2003 donated by Anne Ayers, Tony Berlant Interview by Tony Berlant, and Bowery Gallery Records, 1969-2000 donated by Bowery Gallery.

Migration to South Africa is motivated by the pursuit of employment, safety, and improved living conditions. However, immigrants encounter significant challenges, such as restricted access to essential services, which were exacerbated by the COVID-19 pandemic. This paper investigates the impact of the COVID-19 pandemic on Malawian immigrants in South Africa, addressing the lack of attention given to this immigrant population by highlighting their vulnerabilities. Using a qualitative exploratory and descriptive approach, in-depth interviews were conducted with 24 Malawi immigrants who were over 18 years old and had established residency in South Africa before the onset of the COVID-19 pandemic. Five key stakeholders were also interviewed for additional perspectives and to ensure triangulation and improve data reliability. The interviews were transcribed verbatim and analyzed using thematic analysis strategies and coding with Nvivo12 software. The study highlighted the exacerbated struggles of Malawian immigrants in South Africa amid the COVID-19 pandemic, uncovering systemic discrimination in healthcare, marked by longer wait times and reluctance from health workers to treat undocumented immigrants. The study also revealed a dire security situation, with immigrants living in high-crime areas and feeling particularly targeted due to their foreign status, a situation worsened by the pandemic's economic effects. Additionally, the economic downturn induced by COVID-19 significantly impacted employment opportunities, with many immigrants facing prolonged unemployment and job losses, especially in sectors where they traditionally found work. The detailed accounts of participants highlight not only the multifaceted challenges imposed by the pandemic but also the critical need for inclusive policies and support systems that ensure healthcare access, safety, and economic resilience for immigrants, particularly during global health emergencies. Future research should focus on effective interventions for socioeconomic integration and well-being, particularly for immigrants from other African countries. [ABSTRACT FROM AUTHOR]

The last three census data highlighted that UK Bangladeshi communities have the worst health outcomes. This includes a higher risk of type two diabetes and heart diseases; both are risk factors for developing vascular dementia. However, little is known about Bangladeshi community members' understandings of dementia, including cultural myths. This paper focuses on the cultural myths, superstitions, and stigma surrounding dementia in an English Bangladeshi community from the direct experiences of people living with dementia, their caregivers, and the views of dementia service providers/stakeholders. This qualitative research was undertaken with three distinct participant groups using semistructured interviews (n = 25), who were recruited from community settings. The first and second participant groups explored the experiences of people with dementia (n = 10) and their family caregivers (n = 10). The third group examined stakeholders'/service providers' views (n = 5). Interviews were recorded digitally and transcribed verbatim. Findings were reached using an interpretive approach, emphasising the sense people make in their own lives and experiences and how they frame and understand dementia. The study revealed that participants with dementia and their caregivers have "alternative" knowledge about dementia and do not necessarily understand dementia in a Westernised scientific/biomedical context. Misconceptions about dementia and belief in various myths and superstitions can lead people to go to spiritual healers or practice traditional remedies rather than to their GPs, delaying their dementia diagnosis. This paper concludes that there is a lack of awareness among the Bangladeshi participants and a need for targeted awareness about dementia to help dispel cultural myths and combat the stigma surrounding dementia within the Bangladeshi community. [ABSTRACT FROM AUTHOR]

Background: Adolescent girls face numerous challenges which hinder their ability to manage menstruation in a healthy and dignified manner. Objectives: To examine the menstrual hygiene practices of adolescent girls schooling in rural Anambra communities. Study design: Cross-sectional descriptive study. Method: Participants were selected using multistage stratified random sampling technique and interviewed using self-administered semi-structured questionnaire. Data were analysed using Statistical Package for Social Sciences version 22.0. Results: Mean age of all, pre-menarche and post-menarche girls were 14.7 ± 1.84, 12.8 ± 1.09 and 15.1 ± 1.73 years, respectively. About 46% of the pre-menarche girls had not received any information on menstruation. Common sources of initial menstruation information were mother (87.3%), school (52.2%) and peers (20.0%). Among the 1091 (85.0% (1091/1283)) post-menarche girls, last menstrual period, last menstrual period duration and cycle length could not be recalled by 53.9%, 34.4% and 39.3%, respectively. Majority (98.3%) who could recall last menstrual period had a cycle length of ⩽30 days and the mean duration of menses was 4.4 ± 0.84 days. Disposable sanitary pad was mostly (60%) cited as recommended product, but cloth/rags (40.6%) or tissue paper (32. 3%) were predominantly used. Majority (88.6%) took their bath ⩾twice/day, 50.9% changed sanitary product ⩽twice/day while 72.5% exhibited poor hand washing. Sanitary products were mostly discarded by burning (45.4%). Fifty-one percent could not change in school predominantly due to lack of functional toilets/changing rooms (84.2%) while 72.5% of those who changed did so in bushes or unused spaces. Challenges faced during menstruation include restriction from holy places (38.9%), waist pain (74.9%), blood stains (36.1%) and lack of money to buy pad (27.0%). Factors significantly associated with using commercial pads were age (p = 0.047), class (p = 0.006), mother's educational status (p < 0.001), social class (p < 0.001), ability to recall last menstrual period date (p = 0.029) or duration (p = 0.001). Conclusion: Menstrual hygiene management was unsatisfactory among studied adolescents. Continuous education of adolescent girls on menstrual hygiene management and advocacy for adequate menstrual hygiene management support are imperative. [ABSTRACT FROM AUTHOR]

Introduction: Neonatal care is complex, involving multiple people and technologies within a community of care. When preterm babies are cared for far from home and/or transferred between units, the whole community of care (and particularly parent participation) is disrupted. Although previous studies have captured subjective experiences of parents, there has been little research exploring the material practices undertaken by parents as a consequence of place‐of‐care decisions, or the social organisation of those practices. Methods: As part of a wider study exploring optimal place‐of‐care, semistructured interviews were conducted between July 2018 and October 2019 with 48 parents (36 families) with one or more preterm babies (born at 27–31 weeks gestation) cared for in a neonatal unit in the last 12 months. Findings: We highlight parents' labour‐intensive and stressful work to: (1) parent in the neonatal care community (an oversight role that goes beyond contemporary notions of 'involvement'); (2) create continuity amid place‐of‐care disruptions; and (3) adapt to the managerial logics of neonatal care settings. Our analysis focuses on the work generated by managerial systems that organise place‐of‐care decision‐making and other efficiency‐focused practices. Parents are absorbed into negotiating institutional systems and diverted from routine parenting activities. Conclusion: Those involved in the organisation and management of neonatal care should take account of how managerial systems impact parents' workload, ability to participate in their baby's community of care and, ultimately, on the wellbeing and development of babies and their families. Patient or Public Contribution: The OPTI‐PREM study embedded parents' experiences of neonatal care into the research, through a discrete workstream that employed qualitative methodology to capture parents' experiences—as reported in this paper. The OPTI‐PREM project was also supported by a Bliss volunteer parent panel, which was involved in designing and overseeing the research. Bliss 'champion[s] the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionals and enabling life‐changing research' (https://www.bliss.org.uk/about-us/about-bliss). A representative of Bliss is a co‐author of this manuscript, and a parent representative (named in the Acknowledgements) provided feedback during its preparation. [ABSTRACT FROM AUTHOR]

Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [ABSTRACT FROM AUTHOR]

Introduction: Associations between structural inequalities and health are well established. However, there is limited work examining this link in relation to mental health, or that centres public perspectives. This study explores people's experience and sense‐making of inequality in their daily lives, with particular consideration of impacts on mental health. Methods: We conducted a peer research study. Participants had to live in one of two London Boroughs and have an interest in inequalities and mental health. Using social media, newsletters, local organisations and our peer researchers' contacts, we recruited 30 participants who took photos representing their experience of inequality and discussed them during semi‐structured interviews. Data were analysed using reflexive thematic analysis. Results: Three themes were identified in this study: (1) inequalities are unjust, multilayered and intertwined with mental health. Accounts demonstrated a deep understanding of inequalities and their link to mental health outcomes, describing inequalities as 'suffering' and 'not good for anyone'. Financial, housing, immigration and healthcare problems exacerbated poor mental health, with racism, gender‐based violence and job loss also contributing factors for both poor mental health and experiences of inequality; (2) inequalities exclude and have far‐reaching mental health consequences, impacting personal sense of belonging and perceived societal value and (3) moving forwards—addressing long‐standing inequality and poor public mental health necessitated coping and resilience strategies that are often unacknowledged and undervalued by support systems. Conclusion: Lived experience expertise was central in this study, creating an innovative methodological approach. To improve public mental health, we must address the everyday, painful structural inequalities experienced by many as commonplace and unfair. New policies and strategies must be found that involve communities, redistributing resources and power, building on a collective knowledge base, to coproduce actions combatting inequalities and improving population mental health. Patient or Public Contribution: This study was peer‐led, designed and carried out by researchers who had experiences of poor mental health. Six authors of the paper worked as peer researchers on this study. [ABSTRACT FROM AUTHOR]

A smartphone application (app) from the company Monsenso was developed to monitor anxiety symptoms in the treatment of anxiety disorders as an alternative to paper registrations. The aim of the study was to explore patient and therapist experiences of using the app in conjunction with standard treatment for anxiety disorder in a developmental and implementation phase. The study design was qualitative. Semi-structured interviews were conducted with three therapists and seven patients from an outpatient clinic. The interviews were analysed using thematic analysis. Three main themes emerged for both patients and therapists. The patient themes were usability (it was easier to use the app and remember daily mood registrations), insight in own disorder (awareness of symptom progress), and support to use the app (support from the therapist was wanted). The therapist themes were therapeutic quality (app registrations made it easier to prepare sessions), the role of the therapist (enthusiasm and technical assistance affected the patient), and implementation challenges (time allocation is important). The anxiety monitoring app is recommended in standard treatment as an alternative to paper registrations. However, a successful development and implementation process include ready available technical support, time allocation, and therapist effort and enthusiasm. [ABSTRACT FROM AUTHOR]

Background: Being attached to a primary care (PC) provider is at the core of a strong primary health care system. Centralized waiting lists (CWL) for unattached patients have been implemented in eight provinces of Canada to support the attachment process. In Quebec, the Ministry of Health mandated the implementation of Primary Care Access Points (GAP) across the province to help unattached patients navigate the health system while awaiting attachment through the CWL. Several local health territories developed complementary innovations to the GAP to respond to local population needs. This paper aims to describe five organizational innovations implemented locally. Methods: This multi-case qualitative study was conducted in four local health territories in the province of Quebec. Fifty-two semi-structured interviews with healthcare managers, nurses, physicians, other health professionals and administrative staff were conducted between April 2023 and April 2024. An interview guide was developed based on existing frameworks on the implementation of innovations and the evaluation of the GAP. Thematic analysis was conducted using NVivo software. Inductive and deductive approaches were used to develop relevant codes and themes. Logic models were built to describe the organizational innovations. Results: Five organizational innovations are described. First, a multidisciplinary clinic aimed at responding to patients with mental health issues was implemented. Second, a nurse clinic was implemented to provide temporary care for patients with unstable chronic illnesses. The third innovation is a mobile proximity clinic where unattached GAP patients are first evaluated by a paramedic before receiving care from a nurse. Fourth, a pharmacist trajectory was implemented to increase engagement of community pharmacists to respond to GAP patients. The last innovation is a decentralized GAP offering in-person nursing care to unattached GAP patients. Conclusions: Descriptions of these five innovations are key to inform other territories and provinces on ways to improve access for unattached patients while they are waiting to be attached. The introduction of the GAP and the organizational innovations, suggests a transition where access to PC services does not rely solely on attachment status. [ABSTRACT FROM AUTHOR]

Background: As the number of large-scale outbreaks continues to rise worldwide, clinical trials are increasingly engaging disease-affected peoples within the Minority World (nations with over 80% poverty rates). Yet global health research inadequately addresses potential ethical issues of including impoverished, disease-affected populations and their contextual vulnerabilities in medical research. Objective: This paper presents a mixed-method analysis from our 2022 semi-structured survey capturing the experiences of Liberian Ebola Virus Disease (EVD) survivors serving as study participants in the Partnership for Research on Ebola Virus in Liberia (PREVAIL) clinical trials. Methods: Firstly, we conducted an extensive literature review of the scholarship related to biomedical research and ethical standards protecting study participants to inform our survey method and design. Applying a theoretical framework on vulnerability, we then qualitatively explored the survey responses of 19 EVD survivors' perceptions and experiences taking part in PREVAIL, including their expectations, treatment, delivered benefits, and quality of care. We further quantitatively codified their statements for underlying themes of reported negative experiences against standard ethical regulations in biomedical research, conducting a statistical analysis to inform generalizability. Most of the 19 survivors reported facing extreme ongoing vulnerabilities related to their disease status, including physical impairments, psychosocial stress, and socio-economic inequity. Results: Initially, the survivors tended to experience a sense of hope and pride in volunteering for PREVAIL. One in five participants reported benefiting from PREVAIL's regular medical diagnoses. However, most of their survey responses indicated prevalent negative shared experiences, including continually being confused or misinformed of their study participant rights, roles, and benefits; being burdened by heavy participation transaction costs; and repeated incidents of poor treatment and discrimination by PREVAIL staff after initial recruitment. PREVAIL participant satisfaction ranking is negatively correlated with receiving insufficient financial compensation (r = −0.51), extensive time requirements for each medical visit (−0.40), and being poorly treated by clinical staff (−0.67). [ABSTRACT FROM AUTHOR]

Background and aims: A substantial minority of autistic individuals score within typical ranges on standard language tests, suggesting that autism does not necessarily affect language acquisition. This idea is reflected in current diagnostic criteria for autism, wherein language impairment is no longer included. However, some work has suggested that probing autistic speakers' language carefully may reveal subtle differences between autistic and nonautistic people's language that cannot be captured by standardized language testing. The current study aims to test this idea, by determining whether a group of autistic and nonautistic individuals who score similarly on a standardized test show differences in the number of unconventional and erroneous language features they produce in a spontaneous language sample. Methods: Thirty-eight older children and adolescents (19 autistic; 19 nonautistic), between the ages of 10 and 18, were recruited. Both participant groups scored within normal ranges on standardized language and IQ tests. Participants engaged in a "double interview" with an experimenter, during which they were first asked questions by the experimenter about themselves, and then they switched roles, so that it was the participant's turn to ask the experimenter questions. Participants' language during the interview was transcribed and analyzed for linguistic irregularities, including both semantic anomalies and morphosyntactic errors. Results: Group membership accounted for significant variance in irregularity frequency; autistic participants produced more linguistic irregularities than nonautistic participants. Scores on a standardized language test did not improve model fit. Secondary analyses involving irregularity type (semantic vs. morphosyntactic) showed that group differences were primarily driven by relatively high numbers of semantic unconventionalities produced by the autistic group. While the autistic group made more morphosyntactic errors than the nonautistic group, differences in these numbers were only marginally significant. Conclusions and implications: These findings suggest that a commonly used standardized language test does not adequately predict the number and perhaps type of language irregularities produced by some older autistic children and adolescents during spontaneous discourse. Results also suggest that differences in language use, especially semantic differences, may characterize autistic language, even the language produced by people who score within normal ranges on standardized language tests. It is debatable whether differences reflect underlying language impairments and/or a linguistic style adopted/preferred by autistic speakers. In this paper, we discuss both possibilities and offer suggestions to future research for teasing these possibilities apart. [ABSTRACT FROM AUTHOR]

Background: Health system responsiveness to public priorities and needs is a broad, multi-faceted and complex health system goal thought to be important in promoting inclusivity and reducing system inequity in participation. Power dynamics underlie the complexity of responsiveness but are rarely considered. This paper presents an analysis of various manifestations of power within the responsiveness practices of Health Facility Committees (HFCs) and Sub-county Health Management Teams (SCHMTs) operating at the subnational level in Kenya. Kenyan policy documents identify responsiveness as an important policy goal. Methods: Our analysis draws on qualitative data (35 interviews with health managers and local politicians, four focus group discussions with HFC members, observations of SCHMT meetings, and document review) from a study conducted at the Kenyan Coast. We applied a combination of two power frameworks to interpret our findings: Gaventa's power cube and Long's actor interface analysis. Results: We observed a weakly responsive health system in which system-wide and equity in responsiveness were frequently undermined by varied forms and practices of power. The public were commonly dominated in their interactions with other health system actors: invisible and hidden power interacted to limit their sharing of feedback; while the visible power of organisational hierarchy constrained HFCs' and SCHMTs' capacity both to support public feedback mechanisms and to respond to concerns raised. These power practices were underpinned by positional power relationships, personal characteristics, and world views. Nonetheless, HFCs, SCHMTs and the public creatively exercised some power to influence responsiveness, for example through collaborations with political actors. However, most resulting responses were unsustainable, and sometimes undermined equity as politicians sought unfair advantage for their constituents. Conclusion: Our findings illuminate the structures and mechanisms that contribute to weak health system responsiveness even in contexts where it is prioritised in policy documents. Supporting inclusion and participation of the public in feedback mechanisms can strengthen receipt of public feedback; however, measures to enhance public agency to participate are also needed. In addition, an organisational environment and culture that empowers health managers to respond to public inputs is required. [ABSTRACT FROM AUTHOR]

Background: Nepal has a long history of labour migration over the years. Migrants can experience a range of problems in their destination countries, and women are more at risk than men. This paper is the first to explore the problems faced by Nepalese women migrants while working abroad. Methods: This study was conducted among 1,889 women who were registered as migrant returnees at an organisation called Pourakhi Nepal. The study extracted and analysed data from a non-governmental organisation that supports returning female migrant workers in Nepal. Results: Around half (43.1%) of the women were 35 or older, 30.9% were illiterate, and 63.6% were in their first overseas job. More than one-third (38.5%) had self-reported workplace harassment. Physical violence was the most prevalent (68%), followed by verbal abuse (37.5%), mental stress (29.7%), and sexual abuse (14.1%). Women who were illiterate (adjusted odds ratio [AOR]1.25, 95% confidence interval [CI]: 1.01 to 1.55), unmarried (AOR 1.27, 95% CI: 1.05 to 1.56), worked abroad twice or more (AOR 1.35, 95% CI: 1.10 to 1.66), changed their place of work (AOR 2.38, 95% CI: 1.42 to 4.01), lived without documents (AOR 1.24, 95% CI: 1.03 to 1.50), worked as domestics (AOR 3.56, 95% CI: 2.03 to 6.23), worked in other than Gulf Cooperation Council countries (AOR 1.45, 95% CI: 1.06 to 1.99), women who did not have a fixed salary (AOR 1.64, 95% CI: 1.28 to 2.10) and did not receive salary (AOR 3.71, 95% CI: 2.88 to 4.77) were more likely to be harassed at work. Conclusion: Our findings suggest that the host governments should introduce and enforce policies protecting women in the workplace. Migrant women should be provided with better information about health risks and hazards as well as how to improve preventive measures in destination countries to reduce workplace harassment. [ABSTRACT FROM AUTHOR]

This paper reports on a service evaluation of PeerTalk, a nationwide charity that organises and facilitates peer support groups for individuals with depression. Therefore, the aim was to gather and synthesise benefits perceived by support group attendees. Thematic analysis was undertaken following the collection of data from two group interviews comprising PeerTalk support group attendees. Once those data were analysed, five key themes emerged: (1) talking/listening, (2) socialising, (3) contrast with other services, (4) personal benefits, and (5) structure and accessibility. Two further minor themes were also identified: (6) wider benefits and (7) areas for development that could lead to overall improvements to the service. PeerTalk's support groups provide multiple opportunities for attendees to meet others who have similar experiences within an environment that does not require formal engagement or commitment. Those that attend find benefit from supporting others and socialising within the group. These benefits are complementary to mainstream services that they may concurrently be involved with, rather than replacing or hindering them. Peer support groups can therefore provide a resource for healthcare professionals to which they can direct individuals who may feel benefit from engaging with other individuals with similar experiences. Sheffield Hallam University granted ethics approval for the study (ER:59716880) prior to its commencement (16 February 2024). [ABSTRACT FROM AUTHOR]

Introduction. Gender affirming hormone therapy (GAHT) is an important aspect of health care for many transgender and non-binary (TNB) people, but little is known about the long-term outcomes for TNB people in Aotearoa New Zealand (NZ). Pathways to access GAHT are shifting from secondary care towards primary care, so this is an opportune time to commence local research on long-term health and wellbeing outcomes for people initiating GAHT. Aim. This paper aims to report on the key findings from four meetings held to inform the design of a prospective cohort study to follow the journey of people initiating GAHT in primary and secondary care settings in NZ. Methods. We worked with a community advisory group of six TNB young people and sought input from 14 health care providers involved in the care of TNB people initiating GAHT (GPs, secondary care doctors, and mental health providers). Semi-structured interview schedules were used to guide discussions. Template analysis was used to initially code data based on themes identified from the interview schedule and new themes from discussions were added. Results. Participants shared ideas about recruitment and data collection priorities for baseline and follow-up surveys. These included understanding the journey to starting hormone therapy (information-seeking, decision-making), access to services for GAHT initiation, appropriateness of information provision, receipt of the first prescription, goals for and experience of GAHT, and the unique needs of non-binary people. Discussion. Input from a TNB advisory group and health care professionals has informed the development of a survey that will be used to understand the experience of, and outcomes for, people starting GAHT in NZ. Findings from this planned prospective cohort study have the potential to improve access to GAHT for TNB people who wish to pursue this option. [ABSTRACT FROM AUTHOR]

Introduction. Pacific peoples experience inequity in accessing hearing health care and are disproportionately exposed to the underlying determinants impacting ear and hearing health in Aotearoa New Zealand. Understanding community members’ worldviews, including perspectives, beliefs and values, is essential in developing appropriate and responsive hearing healthcare services to meet the needs of Pacific peoples. Aim. The purpose of this paper is to understand the worldviews, knowledge and beliefs held by Pacific peoples regarding hearing health in Aotearoa New Zealand. Methods. A mixed-methods approach was used. Twelve semistructured face-to-face interviews were conducted with Pacific community members. Twentyfive participants completed an online questionnaire. A simultaneous, integrated mixed-methods approach was used to analyse the qualitative and quantitative data. Results. Five main themes were established, which were: The Meaning of Hearing; Causes of hearing loss; Consequences of hearing loss and Disability; and Improving health care for ear disease and hearing loss. Discussion. Pacific peoples value hearing health to communicate and connect with their families and communities. Participants highlighted the importance of hearing health across the life course. Although the study findings revealed there is potentially less stigma and shame around hearing loss in New Zealand, denial and fatalistic attitudes towards hearing loss may delay some people from seeking healthcare services. Participants expressed key ways in which the health system can be more responsive to the hearing health needs of Pacific peoples in Aotearoa New Zealand. [ABSTRACT FROM AUTHOR]

Objectives: This paper explores parent coaching experiences supporting parents of young children newly diagnosed with type 1 diabetes in a clinical trial. Methods: In a trial for 157 parents, those in the intervention arm (n = 116) were paired with a parent coach (n = 37; Mage = 37.9 years, SD = 3.9; 94.6% mothers, 81.1% White non-Hispanic). Parent coaches provided diabetes-specific social support. Parent coaches completed monthly surveys and satisfaction/feasibility surveys, with a subset (n = 7) undergoing qualitative interviews at the end of this study. Results: There were 2262 contacts between participants and their parent coaches, averaging 14.4 (SD = 9.3) per participant. Parent coaches reported that the most commonly used methods were text messages (67.9%) and emails (18.7%), with 33.6% having in-person visits. Coaches reported high satisfaction and belief in their usefulness to participants during the first 9 months after T1D diagnosis. Themes discussed by parent coaches about their experience in mentoring included relationship building, expertise sharing, personal growth, gratification, and intervention optimization suggestions. Conclusions: Parent coaching post T1D diagnosis involves regular, multi-method contacts. It is highly acceptable and valuable for parent coaches to mentor other parents of young children newly diagnosed with T1D. [ABSTRACT FROM AUTHOR]