Search

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]

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]

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]

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]

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: Previous Canadian reviews of physician, pharmacist, and dentist disciplinary action have noted differences in discipline outcomes across professions and provinces. The objective of this study was to compare the disciplinary action process across provinces and professions, and to describe the perspectives of health professional regulatory bodies on the disciplinary action process. Methods: Participation from medicine, pharmacy, nursing, and dentistry registrars or complaints directors from 10 Canadian provinces was sought. One-on-one, semi-structured interviews were conducted by telephone or video call. Results: Nineteen interviews with regulators were conducted--8 pharmacy, 5 nursing, 5 medicine, and 1 dentistry. Complaints and discipline processes followed a similar overall pathway with some differences. Differences in process were largely due to differences in health regulation legislation and were noted across professions, across provinces, and within a province. Participants tended to be more aligned with regulators within their province rather than regulators of the same profession across the country. Conclusion: To our knowledge, this paper is the first to describe Canadian health professional regulatory body perspectives on the complaints and discipline process. More research is needed to better understand the factors that affect discipline outcomes and to ultimately improve complaints and discipline processes. [ABSTRACT FROM AUTHOR]

Background: Community health worker programmes have the potential to contribute critically towards universal health coverage. However, CHWs globally have often continued to operate on the periphery of the health care system, viewed as a non-essential cadre. This results in a workforce that often remains disempowered and under-supported. This paper presents evidence from a study conducted in a rural part of South Africa, to better understand issues of CHW prioritisation, integration, and empowerment. Methods: We applied an analytical lens based on empowerment theory and conducted a secondary analysis of qualitative data emerging from a sub-study of a cRCT evaluating the effectiveness of supportive supervision for CHWs within a large-scale national CHW programme. The cRCT was conducted between 2017 and 2022, and 39 CHWs were included in the study. Results: We organised our findings across the four domains of structural empowerment; information, resources, support, and opportunity, and mapped these domains against the domains of psychological empowerment. Our findings show how CHWs are still working in the periphery of the healthcare system. Without sufficient prioritisation, high level-support from national and district governments, and sufficient investments in programmatic domains—such as training, equipment, and supportive supervision—it is likely that the CHW cadre will continue to be seen as informal health care workers. Conclusions: CHW empowerment could be a lever to potentially transform the current health system towards universal coverage; however, this process can only happen with sufficient high-level prioritization and investment. [ABSTRACT FROM AUTHOR]

Background: Continuing care is needed for the growing number of chronically ill patients who struggle with health problems after discharge. This study aims to elucidate the development process, functionalities, service protocols, and utilization of an Internet Plus Care (IPC) platform devised by our hospital to offer healthcare services to discharged patients. Methods: This was a mixed study. After describing the development process, function and usage of IPC platform, we retrospectively collect data such as the general information of service recipients and service providers, service items, and service prices through the IPC platform from January 2021 to September 2023 to characterize these services. Results: 69 nurses delivered a total of 788 services to 211 patients through the IPC platform. The majority of services (N = 652, 82.7%) were delivered offline, with almost half of the recipients (N = 384, 48.7%) being elderly individuals. 46.4% of nurses provided services ≥ 3 times. Furthermore, 26.5% of patients received services three or more times. Notably, patients' care requirements exhibited variations across age groups, with wound care (n = 243, 63.3%), pressure injuries care (n = 50, 13.0%), and replacement of indwelling nasogastric tubes (n = 20, 5.2%) emerging as the top three services favored by the elderly. Conclusions: The IPC platform demonstrates potential in delivering diverse health services to patients; however, the involvement of nurses and patients needs to be enhanced. It is necessary to implement relevant safeguard policies to promote the effective use of IPC platform for health management of discharged patients in the future. What does this paper contribute to the wider global clinical community?: The prevalence of chronic diseases is on the rise, and patients with chronic diseases continue to struggle with health problems after discharge and require extended treatment and rehabilitation. Our study proves that IPC platform presents a promising avenue for addressing these challenges. It is anticipated that governmental authorities will undertake comprehensive policy, legislative, and medical insurance reforms to facilitate the extensive adoption of IPC platform-based services. [ABSTRACT FROM AUTHOR]

Understanding the drivers of improvements in child undernutrition at only the national level can mask subnational differences. This paper aimed to understand the contributions of factors in the enabling environment to observed differences in stunting reduction between districts in Rwanda. In 2017, we conducted 58 semi‐structured interviews with mid‐level actors (n = 38) and frontline workers (n = 20) implementing Rwanda's multi‐sectoral nutrition policy in five districts in which stunting decreased (reduced districts) and five where it increased or stagnated (non‐reduced districts) based on Rwanda's 2010 and 2014/15 Demographic and Health Surveys. Mid‐level actors are government officials and service providers at the subnational level who represent the frontline of government policy. Interviews focused on political commitment to and policy coherence in nutrition, and contributors to nutrition changes. Responses were coded to capture themes on the changes and challenges of these topics and compared between reduced and non‐reduced districts. Descriptive statistics described district characteristics. Political commitment to nutrition was high in both reduced and non‐reduced districts. Respondents from reduced districts were more likely to define commitment to nutrition as an optimal implementation of policy, whereas those from non‐reduced districts focused more on financial commitment. Regarding coherence, respondents from reduced compared to non‐reduced districts were more likely to report the optimal implementation of multi‐sectoral nutrition planning meetings, using data to assess plans and progress in nutrition outcomes and integration of nutrition into the agriculture sector. In contrast, respondents from non‐reduced districts more often reported challenges in their relationships with national‐level stakeholders and nutrition and/or monitoring and evaluation capacities. Enhancing the integration of nutrition in different sectors and improving mid‐level actors' capacity to plan and advocate for nutrition programming may contribute to reductions in stunting. Key messages: Understanding the lens through which policy implementers at subnational levels view multi‐sectoral nutrition strategies and their role in these strategies provides useful information on the facilitators and constraints of implementation for nutrition actions.Differences in leadership and responsiveness to prioritise nutrition at the subnational levels are important in decentralised governance systems where responsibilities in nutrition planning, coordination and implementation shift to mid‐level actors.Mainstreaming nutrition responsibilities across sectors and administrative levels requires investments in capacities to plan, monitor and advocate for multi‐sectoral nutrition programming, including for mid‐level actors. [ABSTRACT FROM AUTHOR]

Background: Early identification and treatment of chronic disease is associated with better clinical outcomes, lower costs, and reduced hospitalisation. Primary care is ideally placed to identify patients at risk of, or in the early stages of, chronic disease and to implement prevention and early intervention measures. This paper evaluates the implementation of a technological intervention called Future Health Today that integrates with general practice EMRs to (1) identify patients at-risk of, or with undiagnosed or untreated, chronic kidney disease (CKD), and (2) provide guideline concordant recommendations for patient care. The evaluation aimed to identify the barriers and facilitators to successful implementation. Methods: Future Health Today was implemented in 12 general practices in Victoria, Australia. Fifty-two interviews with 30 practice staff were undertaken between July 2020 and April 2021. Practice characteristics were collected directly from practices via survey. Data were analysed using inductive and deductive qualitative analysis strategies, using Clinical Performance - Feedback Intervention Theory (CP-FIT) for theoretical guidance. Results: Future Health Today was acceptable, user friendly and useful to general practice staff, and supported clinical performance improvement in the identification and management of chronic kidney disease. CP-FIT variables supporting use of FHT included the simplicity of design and delivery of actionable feedback via FHT, good fit within existing workflow, strong engagement with practices and positive attitudes toward FHT. Context variables provided the main barriers to use and were largely situated in the external context of practices (including pressures arising from the COVID-19 pandemic) and technical glitches impacting installation and early use. Participants primarily utilised the point of care prompt rather than the patient management dashboard due to its continued presence, and immediacy and relevance of the recommendations on the prompt, suggesting mechanisms of compatibility, complexity, actionability and credibility influenced use. Most practices continued using FHT after the evaluation phase was complete. Conclusions: This study demonstrates that FHT is a useful and acceptable software platform that provides direct support to general practice in identifying and managing patients with CKD. Further research is underway to explore the effectiveness of FHT, and to expand the conditions on the platform. [ABSTRACT FROM AUTHOR]

Background: Medical interventions have a place in crisis support; however, narrow biomedical and risk‐driven responses negatively impact people seeking crisis care. With increasing shifts towards involving people with lived experience (service users) in designing services, foregrounding people's desired responses is critical. Accordingly, the aim of the study was to explore the wished‐for crisis responses from the perspective of people who have experienced crisis and accessed crisis care. Method: Using a hermeneutical phenomenological approach, in‐depth interviews were conducted to determine the desired crisis responses of 31 people who self‐reported experiencing mental health crises and accessed crisis services at ED, phone lines and/or crisis alternatives. Results: The findings identified wished‐for responses that gave a felt and embodied sense of their own safety influenced by a human‐to‐human response, emotional holding, a place of safety and choice within holistic care. For such responses to be possible, participants identified organising principles, including recognising crisis as meaningful and part of our shared human experience, understanding risk as fluid and a whole‐of‐community responsibility for responding to crises. Conclusion: This paper proposes how insights from people who have experienced crises can be translated into more beneficial crisis care. Patient or Consumer Contribution: Most authors are in identified lived experience roles. The first author engaged with participants during the recruitment and interviews and was explicit regarding their lived experience. Service users were involved as advisors, providing input throughout the study. [ABSTRACT FROM AUTHOR]

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long‐term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high‐risk situations, leading to hypervigilance and paternalistic approaches to care. Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write‐up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors. [ABSTRACT FROM AUTHOR]

Background: Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. Methods: Using Q‐methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow‐up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by‐person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. Results: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision‐making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. Conclusions: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. Patient or Public Contribution: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications. [ABSTRACT FROM AUTHOR]

Introduction: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer‐focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. Methods: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. Results: Thirty parent carers were interviewed, 19 of whom had experienced a health‐promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health‐promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self‐identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health‐promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health‐promoting activities of various kinds. Conclusion: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self‐determination theory. Patient or Public Contribution: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co‐ordinator (A. McD.) who is herself a parent carer. A study‐specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co‐authored by the team's Family Involvement Co‐ordinator (A. McD.). [ABSTRACT FROM AUTHOR]

All research is a social construction. In this paper, we work to illuminate those moments of co-constructed meaning by taking readers on a "behind the scenes" tour of a collaborative research project that explored educator relationships. We describe our priorities in and care for participant recruitment and scheduling, our post-hoc reflections on the differences in emotional tenor between interviews and focus groups, and our own roles and positionalities within the data collection and analysis process. Action-items are recommended for other group-based qualitative studies to humanize the process of research and prioritize moments of agency, trust, and connection among participants. [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: 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: 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]

Background: Despite the increased availability of safe abortion methods in sub-Saharan Africa, women and girls continue to use unsafe abortion methods and procedures to terminate their unwanted pregnancies, resulting in severe complications, lifelong disabilities, and death. Barriers to safe abortion methods include restrictive laws, low awareness of safe abortion methods, poverty, and sociocultural and health system barriers. Nonetheless, there is a paucity of data on the decision-making around and use of abortion methods. This paper aims to provide answers to the following questions: Which abortion methods do women and girls use and why? Who and what influences their decisions? What can we learn from their decision-making process to enhance the uptake of safe abortion methods? We focus our in-depth analysis on the rationale behind the choice of abortion methods used by women and girls in Kilifi County in Kenya and Atlantique Department in Benin. Methods: We draw on data collected as part of an ethnographic study conducted between January and August 2021 on lived experiences, social determinants, and pathways to abortion. Data were collected using repeated in-depth interviews with 95 girls and women who had a recent abortion experience. Data from the interviews were supplemented using information from key informant interviews, focus group discussions, and participant observation. Data analysis was conducted through an inductive process. Results: Our findings reveal that women and girls use various methods to procure abortions, including herbs, high doses of pharmaceutical drugs, homemade concoctions, medical abortion drugs, and surgical abortion methods. Procedures may involve singular or multiple attempts, and sometimes, mixing several methods to achieve the goal of pregnancy termination. The use of various abortion methods is mainly driven by the pursuit of social safety (preservation of secrecy and social relationships, avoidance of shame and stigmatization) instead of medical safety (which implies technical safety and quality). Conclusion: Our findings reaffirm the need for comprehensive access to, and availability of, abortion-related information and services, especially safe abortion and post-abortion care services that emphasize both medical and social safety. Plain Language Summary: Despite the availability of safe abortion methods in sub-Saharan Africa, women and girls in the region continue to resort to unsafe methods, leading to severe complications, disabilities, and maternal death. This can be attributed to restrictive abortion laws, lack of awareness on safe abortion methods, poverty, and sociocultural and health system barriers. This paper uses data from a larger ethnographic study in Kilifi County, Kenya, and Atlantique Department, Benin, to understand which methods women and girls use, and why, to help improve the use of safe abortion methods. Data were collected through in-depth interviews with 95 girls and women who had recently undergone an abortion, as well as key informant interviews, focus group discussions, and participant observation. The findings reveal that women and girls use various methods to terminate their pregnancies, including herbs, high doses of pharmaceutical drugs, homemade concoctions, medical abortion drugs, and surgical methods. They often use these methods once, multiple times, or in combination to achieve their goal. The main reason for their choice of methods is not medical safety but social safety, including preserving social relationships and avoiding shame and stigma. We conclude that there is a pressing need for greater access to accurate, well-framed information about safe abortion methods. Abortion services should consider not only medical safety but also discretion to mitigate the social implications of having an abortion in a medical facility. By addressing these factors, it is possible to enhance the use of safe abortion methods and reduce the reliance on unsafe practices. [ABSTRACT FROM AUTHOR]

Objective: To determine impact of undertaking an international educational program during a nurse's or midwife's pre-registration program on subsequent practice, focusing on how nurses and midwives were transformed personally through participation in such programs. Background: Participation in international educational programs has been reported to enhance nursing and midwifery students' personal and professional development, however long-term impacts remain unclear. This paper presents findings drawn from a larger grounded theory study. Study design and Methods: Charmaz's grounded theory methodology was used to elicit experiences from 13 general nurses, two mental health nurses, three midwives and four dual qualified nurse/midwives across eight different countries. Data analysis led to the creation of three categories, with this paper reporting on the category of Developing as a Person. Findings: Participation in international educational programs can be transformative for nurses and midwives with long-lasting impacts, contributing positively to their personal growth and development. Discussion: The study findings underscore significant long-term impacts of international educational programs for nurses and midwives. These outcomes highlight the importance of incorporating international experiences into healthcare education. Conclusion: By providing opportunities for healthcare professionals to engage with diverse settings and populations, organisations and educational institutions can foster the development of well-rounded and globally competent practitioners. Implications for research, policy, and practice: The study's findings hold significant implications for research, policy, and practice in healthcare education. To deepen our understandings, additional longitudinal research across diverse countries is warranted. Policymakers have an opportunity to acknowledge the positive impact of these programs on the personal growth and development of nurses and midwives, potentially leading to the integration of global competency requirements into licensure programs. In order to provide comprehensive education, educational institutions should consider the inclusion of study abroad opportunities, cultural exchanges, and global clinical placements within nursing and midwifery curricula. What is already known about the topic? • International educational programs are widely used as a way of developing nursing and midwifery students' cultural understandings. • Previous studies have reported on short-term impacts of international educational programs. What this paper adds: • Long-term impacts of participation in an international educational program on nurses and midwives are described. • Personal development and subsequent transformations occur for nurses and midwives as a result of participation in international educational programs. [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]

Background: Healthcare workers (HCWs) in the United Kingdom (UK) have faced many challenges during the COVID-19 pandemic, some of these arising out of their social positions. Existing literature explicating these challenges (e.g., lack of appropriate PPE, redeployment, understaffing) have highlighted inequities in how these have been experienced by HCWs based on ethnicity, gender or, job role. In this paper, we move a step ahead and examine how the intersection of these social positions have impacted HCWs' experiences of challenges during the pandemic. Methods: We collected qualitative data, using interviews and focus groups, from 164 HCWs from different ethnicities, gender, job roles, migration statuses, and regions in the United Kingdom (UK) between December 2020 and July 2021. Interviews and focus groups were conducted online or by telephone, and recorded with participants' permission. Recordings were transcribed and a hybrid thematic analytical approach integrating inductive data-driven codes with deductive ones informed by an intersectional framework was adopted to analyse the transcripts. Results: Thematic analysis of transcripts identified disempowerment, disadvantage and, discrimination as the three main themes around which HCWs' experiences of challenges were centred, based on their intersecting identities (e.g., ethnicity gender, and/or migration status). Our analysis also acknowledges that disadvantages faced by HCWs were linked to systemic and structural factors at the micro, meso and macro ecosystemic levels. This merging of analysis which is grounded in intersectionality and considers the ecosystemic levels has been termed as 'intrasectionalism'. Discussion: Our research demonstrates how an intrasectional lens can help better understand how different forms of mutually reinforcing inequities exist at all levels within the healthcare workforce and how these impact HCWs from certain backgrounds who face greater disadvantage, discrimination and disempowerment, particularly during times of crisis like the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Aim: Customer discovery, an entrepreneurial and iterative process to understand the context and needs of potential adoption agencies, may be an innovative strategy to improve broader dissemination of evidence-based interventions. This paper describes the customer discovery process for the Building Healthy Families (BHF) Online Training Resources and Program Package (BHF Resource Package) to support rural community adoption of an evidence-based, family healthy weight program. Methods: The customer discovery process was completed as part of a SPeeding Research-tested INTerventions (SPRINT) training supported by the U.S. Centers for Disease Control and Prevention. Customer discovery interviews (n=47) were conducted with people that could be potential resource users, economic buyers, and BHF adoption influencers to capture multiple contextual and needs-based factors related to adopting new evidence-based interventions. Qualitative analyses were completed in an iterative fashion as each interview was completed. Results: The BHF Resource Package was designed to be accessible to a variety of implementation organizations. However, due to different resources being available in different rural communities, customer discovery interviews suggested that focusing on rural health departments may be a consistent setting for intervention adoption. We found that local health departments prioritize childhood obesity but lacked the training and resources necessary to implement effective programming. Several intervention funding approaches were also identified including (1) program grants from local and national foundations, (2) healthcare community benefit initiatives, and (3) regional employer groups. Payment plans recommended in the customer discovery interviews included a mix of licensing and technical support fees for BHF delivery organizations, potential insurance reimbursement, and family fees based on ability to pay. Marketing a range of BHF non-weight related outcomes was also recommended during the customer discovery process to increase the likelihood of BHF scale-up and sustainability. Conclusions: Engaging in customer discovery provided practical directions for the potential adoption, implementation, and sustainability of the BHF Resource Package. However, the inconsistent finding that health departments are both the ideal implementation organization, but also see childhood obesity treatment as a clinical service, is concerning. [ABSTRACT FROM AUTHOR]

Background: Crisis Resolution Teams (CRTs) offer home-based care for people in mental health crisis, as an alternative to hospital admission. The success of CRTs in England has been variable. In response to this, the CRT Optimization and RElapse prevention (CORE) study developed and trialled a 12-month Service Improvement Programme (SIP) based on a fidelity model. This paper describes a qualitative evaluation of the perspectives of CRT staff, managers, and programme facilitators. We identify barriers and facilitators to implementation, and mechanisms by which service improvements took place. Methods: Managers and staff from six purposively sampled CRTs were interviewed, as well as six facilitators who were employed to support the implementation of service improvement plans. Semi-structured focus groups and individual interviews were conducted and analysed using thematic analysis. Findings: A majority of participants viewed all components of the SIP as helpful in improving practice, although online resources were under-used. Perceived barriers to implementation centred principally around lack of staff time and ownership. Support from both senior staff and facilitators was essential in enabling teams to undertake the work associated with the SIP. All participating stakeholder groups reported that using the fidelity model to benchmark their CRT work to best practice and feel part of a 'bigger whole' was valuable. Conclusion: CRT staff, managers and programme facilitators thought that a structured service improvement programme helped to increase fidelity to a best practice model. Flexibility (from all stakeholders) was key to enable service improvement actions to be manageable within time- and resource-poor teams. [ABSTRACT FROM AUTHOR]

Background: Medical Assistance in Dying (MAiD) was legalized in Canada in 2016 and amended in 2021. At the time that this study was conducted, the federal government was considering expanding the eligibility criteria to include patients whose death was not reasonably foreseeable. The purpose of this study was to better understand rural healthcare professionals' experiences with assisted dying set against the backdrop of legislative expansion. Methods: A qualitative exploratory study was undertaken with general rural practice physicians, nurse practitioners, registered nurses, ethicists, patients, and patient families in rural Southern Alberta, Canada. For this paper, data from 18 audio-recorded and transcribed semi-structured interviews with healthcare professionals were analyzed using thematic analysis. Categories and patterns of shared meaning that linked to an overarching theme were identified. Results: Between the binary positions of full support for and conscientious objection to assisted dying, rural healthcare professionals' decisions to participate in MAiD was based on their moral convictions, various contextual factors, and their participation thresholds. Factors including patient suffering; personal and professional values and beliefs; relationships with colleagues, patients and family, and community; and changing MAiD policy and legislation created nuances that informed their decision-making. Conclusions: The interplay of multiple factors and their degree of influence on healthcare professionals' decision-making create multiple decision points between full support for and participation in MAiD processes and complete opposition and/or abstention. Moreover, our findings suggest evolving policy and legislation have the potential to increase rural healthcare professionals' uncertainty and level of discomfort in providing services. We propose that the binary language typically used in the MAiD discourse be reframed to reflect that decision-making processes and actions are often fluid and situational. [ABSTRACT FROM AUTHOR]

Background: Immersive technologies such as smart glasses can benefit nursing training and clinical practice. In this paper, we explore the views of nursing graduate students about their experience with smart glasses. Methods: Nursing graduate students (n = 13) were recruited using purposeful sampling. First, a virtual reality intervention for hyperglycemia in nursing care was shown. This was an attempt to introduce people to the technology and start discussions about how it might be used in nursing care. After that, participants underwent online interviews. Thematic analysis was used to examine the data. Results: The study findings indicated that the use of smart glasses as an enjoyable learning experience and immersive games positively affects nursing students. In addition, it was determined that they had negative experiences such as costs, lack of infrastructure, and smart glass side effects. Conclusions: Smart glasses indicate good usability and availability in nursing education and potential for use in hospital nursing practice. [ABSTRACT FROM AUTHOR]

Background: Advanced cancer patients with good Eastern Cooperative Oncology Group (ECOG) performance status (score 0–1) are underrepresented in current qualitative reports compared with their dying counterparts. Aim: To explore the experiences and care needs of advanced cancer patients with good ECOG. Design: A qualitative phenomenological approach using semi-structured interview was employed. Data was analyzed using the Colaizzi's method. Setting/Participants: Purposive sample of terminal solid cancer patients on palliative care aged 18–70 years with a 0–1 ECOG score were recruited from a tertiary general hospital. Results: Sixteen participants were interviewed. Seven themes were generated from the transcripts, including experiencing no or mild symptoms; independence in self-care, decision-making, and financial capacity; prioritization of cancer growth suppression over symptom management; financial concerns; hope for prognosis and life; reluctance to discuss death and after-death arrangements; and use of complementary and alternative medicine (CAM) and religious coping. Conclusions: Advanced cancer patients with good ECOG have distinct experiences and care needs from their dying counterparts. They tend to experience no or mild symptoms, demonstrate a strong sense of independence, and prioritize cancer suppression over symptom management. Financial concerns were common and impact their care-related decision-making. Though being hopeful for their prognosis and life, many are reluctant to discuss death and after-death arrangements. Many Chinese patients use herbal medicine as a CAM modality but need improved awareness of and accessibility to treatment options. Healthcare professionals and policy-makers should recognize their unique experiences and needs when tailoring care strategies and policies. Key statements: What is already known about the topic? • Even in their advanced stage, cancer patients with good ECOG performance status are capable of self-care and less reliant on care provided by other. • Existing qualitative research mainly focuses on advanced cancer patients with poor ECOG, emphasizing pain management, emotional distress, and palliative care. What this paper adds? • Our findings reveal distinct experiences and care needs of advanced cancer patients with good ECOG performance status from their dying counterparts. Implications for practice, theory or policy. • Healthcare professionals should recognize and address the patient group's distinct needs. • Future research should further investigate their symptom trajectory, influencing factors, and care needs to fill the gap in their cancer journey. • Policy-makers should develop tailored policies that consider good ECOG performance status. [ABSTRACT FROM AUTHOR]

Given the aging population, finding solutions to retain optimal cognitive capacity is a research priority. The potential of physical activity to reduce the risk of cognitive decline and to enhance cognitive functioning is established. Combining physical with cognitive activity has been put forward as a potentially even more effective way to promote healthy cognitive aging. Most studies on combined interventions have however been conducted in laboratory settings. This paper reports on a two-phased pilot study evaluating the acceptability and feasibility of a newly developed real-life cognitively enriched walking program for adults aged 65+ years. In Phase I, the feasibility and enjoyability of the cognitive tasks was evaluated by conducting walk-along interviews with older adults (n = 163). In Phase II, the cognitively enriched walking program was piloted in two groups of older adults (n = 19), and the feasibility and acceptability of the program and cognitive tasks was evaluated by means of questionnaires and focus groups. The cognitive tasks (i.e., median scores of ≥3 on a total of 4 (Phase I) and ≥6 on a total of 10 (Phase II) for most of the tasks) and the cognitively enriched walking program (i.e., median scores of ≥7 on a total of 10) were considered feasible and acceptable. Based on the input of the participants, key considerations for a feasible and acceptable program were defined: participants should be sufficiently challenged cognitively and physically, social interaction is an important motivator, cognitive tasks should make use of stimuli reflecting daily life and be conducted in group, the rationale for the tasks should be explained to participants, the frequency of the group sessions should be maximum 2 times a week, and the program should be supervised by a trained coach. These results warrant future research to establish the effectiveness of this program. [ABSTRACT FROM AUTHOR]

Background: Literature shows that in South Africa there are insufficient resources to meet mental healthcare needs. At general or district hospital level, the non-specialist doctor is often responsible for the holistic assessment and management of mental health service users. Such situations inevitably increase doctors' care load as they are required to treat across disciplines. We highlight the particular challenges faced by a community service (CS) doctor in this context. Methods: The presented case study formed part of a larger project that investigated public mental healthcare provision in the Eastern Cape province. Data were collected through a once-off semi-structured interview with the participant. The interview was transcribed and data analysed by utilising thematic analysis to yield results. Results: The study suggests that the CS doctor experiences being overloaded with duties, and feels overwhelmed in a healthcare context that lacks resources needed for service provision, which may lead to inadequate mental healthcare provision to public health service users. Conclusion: Healthcare facilities in rural parts of the Eastern Cape province are in need of assistance. This in-depth account highlighted the consequences of working on the front line of a disadvantaged and under-resourced health system. The presented account can be interpreted as a cry for help by CS doctors for relevant authorities to improve access and provision of mental healthcare in the area. Contribution: The paper provides an exploration of the circumstances wherein mental healthcare is provided in rural parts of South Africa. [ABSTRACT FROM AUTHOR]

Introduction: Telemonitoring has been proposed as an effective method to support integrated care for older people with hypertension and type 2 diabetes. This paper examines acceptability of telemontioring, its role in supporting integrated care, and identifies scale-up barriers. Methods: A concurrent triangulation mixed-methods study, including in-depth interviews (n = 29) and quantitative acceptability tool (n = 55) was conducted among individuals who underwent a 12-month telemonitoring routine. The research was guided by the Theoretical Framework of Acceptability. Interviews were analysed using template content analysis (TCA). Results: TCA identified seven domains of acceptability, with twenty-one subthemes influencing it positively or negatively. In the quantitative survey, acceptability was high across all seven domains with an overall score of 4.4 out of 5. Urban regions showed higher acceptability than rural regions (4.5 vs. 4.3), with rural participants perceiving initial training and participation effort as significantly more burdensome than their urban counterparts. Discussion: Patients described several instances where telemonitoring supported self-management, education, treatment, and identification elements of the integrated care package. However, there were barriers that may limit its further scale-up. Conclusion: For further scale-up, it is important to screen patients for monitoring eligibility, adapt telemonitoring devices to elderly needs, combine telemonitoring with health education, involve family members, and establish follow-up programmes. [ABSTRACT FROM AUTHOR]

Introduction: Development and implementation of the Townsville Lung Cancer Referral Pathway [TLCRP] aims to reduce delays and improve referral patterns of people with suspected lung cancer in north Queensland, Australia. Reported in this paper is the experiences and perspectives of general practitioners [GPs] and specialists of the TLCRP. Methods: This was a descriptive qualitative study nested within a larger project evaluating TLCRP, utilising a broader implementation science framework. In-depth, semi-structured interviews with GPs and specialists were conducted. An iterative, inductive thematic analysis of interview transcripts was used to derive key codes, then grouped into themes regarding participant experiences and perceptions. Results: Data analysis identified two major themes and several sub-themes. The major themes were variation in the uptake of TLCRP and enhancing coordinated care and communication. Discussion: Several enablers and barriers to implementing TLCRP were identified. Barriers to adaptation of TLCRP included lack of clinical time, resistance to changing referral patterns, lack of familiarity or experience with HealthPathways and technology issues. Conclusion: Emerging themes from this study may be used to reduce the barriers and improve uptake of TLCRP and other health care pathways in the local health service and may have wider relevance in other settings. [ABSTRACT FROM AUTHOR]

Background: Globally, it is estimated that one in three adults live with two or more long‐term conditions (multiple long‐term conditions, MLTCs), that require self‐management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient‐healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self‐managing MLTCs, amongst people who experience socioeconomic deprivation. Methods: Semistructured one‐to‐one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. Findings: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self‐management, including social isolation, area‐based and economic exclusion, and health‐related stigma and (4) adapting self‐management strategies, including cost‐effective, and culturally/lifestyle appropriate strategies. Conclusions: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self‐management of MLTCs are of great importance. Patient or Public Contribution: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data. [ABSTRACT FROM AUTHOR]

Introduction: In England, primary care networks (PCNs) offer opportunities to improve access to and sustainability of general practice through collaboration between groups of practices to provide care with a broader range of practitioner roles. However, there are concerns that these changes may undermine continuity of care. Our study investigates what the organisational shift to PCNs means for continuity of care. Methods: The paper uses thematic analysis of qualitative data from interviews with general practitioners and other healthcare professionals (HCPs, n = 33) in 19 practices in five PCNs, and their patients (n = 35). Three patient cohorts within each participating practice were recruited, based on anticipated higher or lower needs for continuity of care: patients over 65 years with polypharmacy, patients with anxiety or depression and 'working age' adults aged between 18 and 45 years. Findings: Patients and clinicians perceived changes to continuity in PCNs in our study. Larger‐scale care provision in PCNs required better care coordination and information‐sharing processes, aimed at improving care for 'vulnerable' patients in target groups. However, new working arrangements and ways of delivering care in PCNs undermine HCPs' ability to maintain continuity through ongoing relationships with patients. Patients experience this in terms of reduced availability of their preferred clinician, inefficiencies in care and unfamiliarity of new staff, roles and processes. Conclusions: New practitioners need to be effectively integrated to support effective team‐based care. However, for patients, especially those not deemed 'vulnerable', this may not be sufficient to counter the loss of relationship with their practice. Therefore, caution is required in relation to designating patients as in need of, or not in need of continuity. Rather, continuity for all patients could be maintained through a dynamic understanding of the need for it as fluctuating and situational and by supporting clinicians to provide follow‐up care. Patient and Public Involvement (PPI): A PPI group was recruited and consulted during the study for feedback on the study design, recruitment materials and interpretation of findings. [ABSTRACT FROM AUTHOR]

Background: Motor neuron disease (MND) (also known as amyotrophic lateral sclerosis) is a life‐limiting neurodegenerative condition. In up to 20% of people with MND, a pathogenic variant associated with autosomal dominant inheritance can be identified. Children of people carrying a pathogenic variant have a 50% chance of inheriting this and a higher, although harder to predict, chance of developing the disease compared to the general adult population. This paper explores the experience of living with the genetic risk of MND. Methods: We undertook a UK‐based interview study with 35 individuals, including: 7 people living with genetically‐mediated forms of MND; 24 asymptomatic relatives, the majority of whom had an increased risk of developing the disease; and 4 unrelated partners. Results: We explore how individuals make sense of genetic risk, unpacking the interplay between genetic knowledge, personal perception, experiences of the disease in the family, age and life stage and the implications that living with risk has for different aspects of their lives. We balance an emphasis on the emotional and psychological impact described by participants, with a recognition that the salience of risk fluctuates over time. Furthermore, we highlight the diverse strategies and approaches people employ to live well in the face of uncertainty and the complex ways they engage with the possibility of developing symptoms in the future. Finally, we outline the need for open‐ended, tailored support and information provision. Conclusions: Drawing on wider literature on genetic risk, we foreground how knowledge of MND risk can disrupt individuals' taken‐for‐granted assumptions on life and perceptions of the future, but also its contextuality, whereby its relevance becomes more prominent at critical junctures. This research has been used in the development of a public‐facing resource on the healthtalk.org website. Patient or Public Contribution: People with experience of living with genetic risk were involved throughout the design and conduct of the study and advised on aspects including the topic guide, sampling and recruitment and the developing analysis. Two patient and public involvement contributors joined a formal advisory panel. [ABSTRACT FROM AUTHOR]

Introduction: Many studies have investigated patients' understandings of how to optimise mental health services. However, only a few studies in the Italian context have involved experts by experience (EbEs), who can be ex‐users, family members of ex‐users or current service collaborators. Their role is crucial in implementing collaborative service quality assessment projects. Method: The study investigated the experience of 35 EbEs, users, and family members who carried out a 9‐month fortnightly project aimed at imagining an 'ideal service'. The facilitators of the discussion groups (two EbEs) were interviewed; written reports of each meeting were produced with relevant comments, notes and specific suggestions; and content analysis was applied. Results: The most important result concerns the effectiveness of the project management method and group leadership carried out by the two EbEs. This approach allowed for complete autonomy of the work, without professional gaze or power imbalance. Also, the ideas and specific contents focused on by the two groups offer strategies to facilitate users' entry and reception in health care centres, to reduce the stigma of mental illness, to improve the centres' physical environment, to improve organisational aspects, to keep family members actively involved and to network mental health services with other territorial services. Conclusions: EbEs have proven to be key figures in ensuring equity of role in the service co‐design process. This also concerns a context, the Italian one, where their role has not yet been recognised and legalised. Their contribution and ideas to improve services could be fundamental not only in mental health centres, but also in other health facilities, and could concern the entire service delivery process rather than being limited to quality assurance, according to a virtuous circle based on active participation and transformation of the role of users. Patient or Public Contribution: This work resulted from close collaboration between the two EbEs who conducted the groups, users and family members, the university, and the psychiatrist in charge of the service. All of them contributed to the research. The EbEs, researchers and psychiatrist participated in the interpretation of the data and are the co‐authors of this paper. [ABSTRACT FROM AUTHOR]

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]

An important cause of stunting is limited consumption of complementary foods, in terms of both quantities and nutrients. Although existing studies show a positive association between fathers' engagement and children's diet, programmes designed to improve complementary feeding practices often only target mothers. In response to this, maternal behaviour change communication (BCC), paternal BCC and food voucher programmes were designed and implemented in Ethiopia using a clustered randomized controlled trial design. The paternal BCC programme included gender‐equal messages to increase fathers' participation in childcare, household labour and decision making. The research reported in this paper is an examination of the BCC programmes, characterizing the behavioural, normative and control beliefs of both mothers and fathers in BCC households compared to those in control households. In this study, a total of 40 participants were included, with 13 mother–father pairs in the BCC + food voucher group, and seven pairs in the control group. Each participant was interviewed separately. We found that BCC mothers showed more gender‐equal tendencies than the control mothers despite being more rural in location. By contrast, the beliefs of BCC and control fathers were similar overall, suggesting men are more resistant to gender‐equal BCC. More work is needed to develop and test effective methods for changing fathers' beliefs and practices. Key messages: Mothers in behaviour change communication (BCC) group mothers held more gender‐equal beliefs than control mothers, while BCC and control fathers shared similar views, suggesting a male resistance to gender equality.Mothers found fathers' involvement in childcare socially acceptable but often perceived them as inexperienced, which limited their participation.Control mothers' traditional view on household chores maintained the conventional labour division, influencing fathers' involvement.Fathers typically resisted maternal control of resources; however, they agreed that the more knowledgeable should lead decision‐making. BCC mothers showed greater confidence in making household decisions as effectively as fathers. [ABSTRACT FROM AUTHOR]

There has been an increasing acknowledgement in the UK of the importance of recognising frailty as a condition that leaves older people vulnerable to dramatic, sudden changes in health triggered by seemingly small events. In policy, the approach to managing frailty is often an emphasis on staying well with limited consideration to frailty as an end-of-life phase. Meanwhile, discharge from hospital continues to be complex. Overstretched acute hospitals are juxtaposed with community and social services that struggle to keep up with the demand of those being discharged and the labelling of older people as "bed blockers" at the centre of delayed discharges. This paper reports a study underpinned by constructivist grounded theory methodology, with the aim of exploring the experiences and perceptions of stakeholders. Semistructured interviews were conducted with 57 participants including patients, their informal carer(s), community hospital staff, community health professionals, and care home managers. The core category of "the drive to discharge conveyor belt" was derived from data analysis. A significant finding of this study was that of the carer, their burden, and their intrinsic role in facilitating discharge, filling in gaps in services, coordinating services, and enabling the patient to stay at home, with little consideration of their choices or autonomy. The "drive to discharge" impacts older people, their informal carers, and health professional. This study suggests how they may be supported, through an ethical lens. [ABSTRACT FROM AUTHOR]

Background: Partnerships between Higher Education Institutions (HEIs) in the global north and south have commonly been used as a vehicle to drive global health research and initiatives. Among these initiatives, include health system strengthening, research capacity building, and human resource training in developing countries. However, the partnership functioning of many global north-south partnerships still carry legacies of colonialism through unrecognized behavior patterns, attitudes, and belief systems in how they function. Even with research literature calling for a shift from equality to equity in the functioning of these partnerships, many still struggle with issues of complex and unspoken power dynamics. To understand the successes and challenges of north-south partnerships, this paper explored partnership development and functioning of a northern and multi-southern HEIs partnership focused on nutrition education and research. Methods: A qualitative research approach was used; data were collected through in-depth interviews (IDIs) with questions developed from the Bergen Model of Collective Functioning (BMCF). Thirteen IDIs were conducted with partners from all institutions including stakeholders. Findings: The partnership was built on the foundation of experiences and lessons of a previous partnership. Partners used these experiences and lessons to devise strategies to improve partnership inputs, communication, leadership, roles and structures, and maintenance and communication tasks. However, these strategies had an impact on partnership functioning giving rise to issues of inequitable power dynamics. The northern partner had two roles: one as an equal partner and another as distributor of project funds; this caused a conflict in roles for this partner. The partners distinguished themselves according to partner resources – two partners were named implementing partners and two named supportive partners. Roles and partner resources were the greatest contributors to power imbalances and caused delays in project activities. Conclusion: Using the BMCF to examine partnership dynamics illuminated that power imbalances caused a hierarchical stance in the partnership with northern partners having overall control and power of decision-making in the partnership. This could impact the effectiveness and sustainability of project in the southern institutions going forward. [ABSTRACT FROM AUTHOR]

Background: The timely provision of comprehensive contraceptive services to Rohingya women is impeded due to a lack of clarity and understanding of their traditional beliefs and cultural frameworks. Recognizing this challenge, our paper aims to explore the socio-cultural factors influencing the utilization of contraceptives among married Rohingya women living in the refugee camps of Cox's Bazar, Bangladesh. Method: A qualitative study was conducted in two unregistered Rohingya camps (Camp 7&14) located in Ukhiya Upazila, Cox's Bazar from January 10th to 20th, 2022. A total of 14 In-Depth Interviews (IDIs) were conducted among married Rohingya women of reproductive age (15–49 years), along with 16 Key Informant Interviews (KIIs) involving stakeholders engaged in reproductive healthcare provision. Participants were selected using purposive sampling. All interviews were conducted in the local language, recorded, transcribed verbatim, and subsequently translated into English. The data were analyzed using NVivo (Version 11), and the analysis process followed Neuman's three-phase coding system. Results: Five broad themes were identified: Sociocultural expectations and values attached to births, power imbalances within marital relationships, the role of religious beliefs, fear of side effects, and misperceptions about contraception. Having a larger number of children is viewed positively as it is believed that children play a crucial role in preserving the lineage and contributing to the growth of the Islamic population. Despite expressing an inclination towards contraception, the disapproval of husbands becomes a significant barrier for women. Defying their husbands' wishes can result in instances of Intimate Partner Violence (IPV) and even marriage dissolution within the camps. Moreover, the fear of side effects, such as a particular method would cause infertility, discourages women from using contraception. Many of these fears stem from myths, misconceptions, and mistrust in the existing medical system. Conclusion: Addressing the socio-cultural barriers that prevent women from using modern contraception will have important public health implications. These findings can support in crafting culturally sensitive programs and educational interventions. These initiatives can assist Rohingya refugee women in planning their pregnancies and reducing high-risk pregnancies, ultimately leading to a decrease in maternal mortality rates within the community. Plain language summary: The timely provision of comprehensive contraceptive services to Rohingya women is impeded due to a lack of clarity and understanding of their traditional beliefs and cultural frameworks. Taking this into account, our objective is to investigate the socio-cultural factors that influence the utilization of contraceptives among married Rohingya women living in the refugee camps of Cox's Bazar, Bangladesh. A total of 14 IDIs and 16 KIIs were conducted in two unregistered Rohingya camps. We found that contraceptive use among Rohingya refugees was constrained by various socio-cultural and religious beliefs. The desire for a larger number of children to ensure the continuity of the lineage and to be able to contribute to the growth of the Islamic population serves as a major barrier. Lack of decision-making power regarding reproductive life not only stops participation but also makes women vulnerable to IPV and marriage dissolution within the camps. Moreover, the fear of side effects, such as a particular method would cause infertility, discourages women from using contraception. Many of these fears stem from myths, misconceptions, and mistrust in the existing medical system. Young women often acquire information about both true side effects and myths from their social networks. Therefore, developing culturally sensitive programs and educational interventions targeting the women, their peers, and other related communities is indispensable to assist Rohingya refugee women in overcoming the identified barriers to contraception. [ABSTRACT FROM AUTHOR]

Background: Gender dysphoria among transgender adolescents has predominantly been examined in relation to body dissatisfaction. While in adult transgender samples, body dissatisfaction is higher than in cisgender controls, this has so far rarely been investigated for adolescents. In the context of a cisnormative society, the impact of influences from the social environment on body dissatisfaction and gender dysphoria has been neglected in research. Therefore, this study aimed to (1) provide a detailed analysis of body dissatisfaction among young transgender people and (2) investigate whether body dissatisfaction and gender dysphoria are associated with experiences of minority stress such as trans hostility and poor peer relations (PPR). Methods: The paper presents a cross-sectional study among a sample of transgender adolescents, presenting at a specialized outpatient counseling clinic (N = 99; age M = 15.36, SD = 1.85). First, body dissatisfaction (assessed by the Body-Image-Scale; BIS), was explored and compared to data from a population-based control group of cisgender peers (N = 527; age M = 14.43, SD = 0.97). Second, within a clinic-referred transgender subsample (n = 74), associations between body dissatisfaction and gender dysphoria (measured by Utrecht Gender Dysphoria Scale; UGDS), PPR (measured by the Youth-Self-Report; YSR-R), and trans hostile experiences (assessed in clinical interview) were examined by correlations, t-tests and multivariate regression. Results: Transgender adolescents reported more body dissatisfaction than cisgender peers. The dissatisfaction with sex characteristics, non-hormonal reactive body regions and the total score for body dissatisfaction were positively related with gender dysphoria. The majority had experienced trans hostility in the present and/or past (54.1%) and PPR (63.5%). More body dissatisfaction was correlated with more PPR regarding visible body parts i.e., hair, overall appearance and muscles, whilst PPR and gender dysphoria were not associated. Transgender adolescents who experienced trans hostility showed higher gender dysphoria and PPR, but not more body dissatisfaction. In multiple regression, trans hostility predicted gender dysphoria, whilst age and PPR predicted body dissatisfaction. Discussion: Experiences of minority-stress differentially interact with body dissatisfaction and gender dysphoria among transgender adolescents. Social correlates of body dissatisfaction and gender dysphoria must be considered when working with young transgender people. [ABSTRACT FROM AUTHOR]

Background: There has been a persistent increase in clients' dissatisfaction with providers' competencies in maternal and child healthcare (MCH). Existing interventions have failed to address the complexity of provider-client relationships. Therefore, targeted, contextualized innovative solutions that place providers and clients at the forefront as agents of change in optimizing intervention design and implementation are needed. The study team adopted a co-design strategy as part of Human- Centered Design (HCD) approach, where MCH nurses, clients, and stakeholders partnered to design an intervention package to improve provider-client relationships in rural Tanzania. Objective: This paper explored nurses', clients', and MCH stakeholders' perspectives following participation in a co-design stage of the HCD study to generate interventions to strengthen nurse-client relationships in Shinyanga Region. Methods: A qualitative descriptive design was used. Thirty semi-structured key informant interviews were conducted in the Swahili language with purposefully selected nurses, clients, and MCH stakeholders. The inclusion criterion was participation in consultative workshops to co-design an intervention package to strengthen nurse-client relationships. Data were transcribed and translated simultaneously, managed using NVivo, and analyzed thematically. Results: Three main themes were developed from the analysis, encompassing key learnings from engagement in the co-design process, the potential benefits of co-designing interventions, and co-designing as a tool for behavior change and personal commitment. The key learnings from participation in the co-design process included the acknowledgment that both nurses and clients contributed to tensions within their relationships. Additionally, it was recognized that the benefits of a good nurse-client relationship extend beyond nurses and clients to the health sector. Furthermore, it was learned that improving nurse-client relationships requires interventions targeting nurses, clients, and the health sector. Co-designing was considered beneficial as it offers a promising strategy for designing effective and impactful solutions for addressing many challenges facing the health sector beyond interpersonal relationships. This is because co-designing is regarded as innovative, simple, and friendly, bringing together parties and end-users impacted by the problem to generate feasible and acceptable interventions that contribute to enhanced satisfaction. Furthermore, co-designing was described as facilitating the co-learning of new skills and knowledge among participants. Additionally, co-designing was regarded as a tool for behavior change and personal commitment, influencing changes in participants' own behaviors and cementing a commitment to change their practices even before the implementation of the generated solutions. Conclusion: End-users' perspectives after engagement in the co-design process suggest it provides a novel entry point for strengthening provider-client relationships and addressing other health sector challenges. Researchers and interventionists should consider embracing co-design and the HCD approach in general to address health service delivery challenges. [ABSTRACT FROM AUTHOR]

Background: In the last decade, there has been a growing concern to make palliative care more culturally sensitive and contextually appropriate. This concern is also relevant in Indonesia, where the progress of palliative care, particularly in home-based care, has been slow. Like elsewhere in the world, there has been a growing awareness of the importance of shifting from a curative orientation towards a palliative one, especially in cases where further medical treatment is futile. In this paper we argue that the development of palliative care practices would benefit greatly from learning about the values that are important for patients, families, and health professionals. It is important to understand these values to support forms of care that aim to enhance quality of life. To demonstrate this, we analyse the care values people in rural Java evoke in their home palliative care practices. Methods: We conducted an eight-month ethnographic study involving forty-nine patients, families, and health professionals. Results: We identified three specific Javanese Islamic values: making an effort (ikhtiar), being sincere (ikhlas), and being in a state of surrender (pasrah). These values influenced the participants' activities in a palliative care setting. Based on our findings, we suggest three strategies to incorporate these values into palliative care practices and to better facilitate palliative care's integration into Javanese Muslim communities. The first strategy is to include efforts to reduce suffering and improve the quality of life using the concept of ikhtiar. The second strategy is to foster sincerity (ikhlas) to help patients and families accept the realities of their condition and provide care for patients at home. The last strategy is to clarify that palliative care is not synonymous with 'giving up' but can be seen as an act of pious surrender. Conclusions: Our study identified three Islamic-Javanese values that can be incorporated to strategies aiming at enhancing palliative care practices, resulting in care focused on improving quality of life rather than futile attempts at a cure. [ABSTRACT FROM AUTHOR]

The emergence of the COVID-19 pandemic significantly changed the prenatal care experience, specifically regarding medical appointments and social opportunities. It is critical to capture this change through the narratives of pregnant people, particularly those of marginalized populations, whose voices may often be underrepresented in the literature. This mixed-methods paper summarizes the experiences of 40 pregnant Black/African American (AA) women during the COVID-19 pandemic. A cross-sectional, online survey was administered between 2020 and 2021 to assess prenatal health and the impacts of the COVID-19 pandemic on patients' pregnancy experience. Coping behaviors during the pandemic were self-reported using the COPE-IS. Univariate analyses were conducted. An additional analysis of participants (n = 4) was explored through a week-long qualitative exercise using a photo documentation procedure. Photo-Elicitation Interviews (PEI) were conducted to capture and center their pandemic pregnancy experiences. Sources of stress during the pandemic varied, with the most common being financial concerns (n = 19, 47.5%). Over half of the sample (n = 18, 54.5%) self-reported increases in their positive coping behaviors during the pandemic, such as communicating with friends and family, talking to healthcare providers, listening to music, and engaging in spiritual practices–such as prayer. The four PEI study participants reflected on the impacts of social distancing on their prenatal experience and mentioned hospital and provider-related weariness due to their race. The findings of this study suggest that during the COVID-19 pandemic, Black/AA pregnant women in Charlotte, NC used social support, mindfulness practices, self-advocacy, and health literacy to navigate challenges present during their prenatal health experience. This paper highlights the personal, social, and structural experiences of pregnant women during a public health crisis so that responsive and effective programs or policies can be planned in the future. [ABSTRACT FROM AUTHOR]

Background: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation‐STakeholder Engagement Model (I‐STEM) in the context of an international, large‐scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I‐STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. Methods: In‐depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet‐based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first‐ and third‐generation Grounded Theory, including constant comparative method. Results: We conducted 55 interviews and observed 19 implementation‐related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I‐STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. Conclusion: The I‐STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I‐STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. Patient or Public Contribution: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN‐Europe at all stages—from grant development to dissemination. GAMIAN‐Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN‐Europe was involved in pilot testing the ItFits‐toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits‐toolkit. Trial registration: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018. [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]

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]

We hope to contribute to the field of research in information technology and digital libraries by analyzing the connections between Thematic Digital Universities and digital user-learner profiles. Thematic Digital Universities are similar to digital libraries, and focus on creating and indexing open educational resources, as well as improving learning in the information age. The digital user profile relates to the digital representation of a person's identity and characteristics. In this paper we present the design of an ontology for the digital User-Learner Profile (OntoULP) and its application program. OntoULP is used to structure a user-learner's digital profile. The application provides each user-learner with tailor-made analyses based on informational behaviors, needs, and preferences. We rely on an exploratory research approach and on methods of ontologies, user modeling, and semantic matching to design the OntoULP and its application program. Any user-learner could use the OntoULP and its application program. [ABSTRACT FROM AUTHOR]

The emergence of the COVID-19 pandemic significantly changed the prenatal care experience, specifically regarding medical appointments and social opportunities. It is critical to capture this change through the narratives of pregnant people, particularly those of marginalized populations, whose voices may often be underrepresented in the literature. This mixed-methods paper summarizes the experiences of 40 pregnant Black/African American (AA) women during the COVID-19 pandemic. A cross-sectional, online survey was administered between 2020 and 2021 to assess prenatal health and the impacts of the COVID-19 pandemic on patients' pregnancy experience. Coping behaviors during the pandemic were self-reported using the COPE-IS. Univariate analyses were conducted. An additional analysis of participants (n = 4) was explored through a week-long qualitative exercise using a photo documentation procedure. Photo-Elicitation Interviews (PEI) were conducted to capture and center their pandemic pregnancy experiences. Sources of stress during the pandemic varied, with the most common being financial concerns (n = 19, 47.5%). Over half of the sample (n = 18, 54.5%) self-reported increases in their positive coping behaviors during the pandemic, such as communicating with friends and family, talking to healthcare providers, listening to music, and engaging in spiritual practices–such as prayer. The four PEI study participants reflected on the impacts of social distancing on their prenatal experience and mentioned hospital and provider-related weariness due to their race. The findings of this study suggest that during the COVID-19 pandemic, Black/AA pregnant women in Charlotte, NC used social support, mindfulness practices, self-advocacy, and health literacy to navigate challenges present during their prenatal health experience. This paper highlights the personal, social, and structural experiences of pregnant women during a public health crisis so that responsive and effective programs or policies can be planned in the future. [ABSTRACT FROM AUTHOR]