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Older adults have multiple medical and social care needs, requiring a shift toward an integrated person‐centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person‐centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy‐three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People‐Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro‐ and meso‐levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro‐level interventions, and (4) importance of transitioning from person‐ to people‐centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real‐world challenges encountered in this field. [ABSTRACT FROM AUTHOR]

Background: Oral healthcare behavior determines oral health status and the incidence of oral diseases. People with type 2 diabetes mellitus (T2DM) are at-risk of having low oral healthcare behavior and disease-related oral health. Objective: To investigate the oral health status and factors associated with oral healthcare behavior among people with T2DM in Thailand. Methods: In total, 401 people with T2DM participated in the study based on their attendance at a non-communicable disease clinic at sub-district health promotion hospitals in Bueng Kan, a north-eastern province in Thailand. A structured questionnaire was used to obtain variables of interest. Linear regression analysis at the 95% confidence interval (CI) was applied. Results: The majority of participants were female (73.8%). More than three-quarters had more than 20 permanent teeth (77.6%), a decay missing filling tooth index was 10.6 teeth/person. Many participants had four permanent occlusal pairs (69.6%), had tooth decay (74.6%), and some participants had tooth filling (32.2%). Statistically significant factors associated with oral healthcare behavior were: having complications associated with diabetes mellitus (Beta = -0.097, 95%CI = -1.653, -0.046), oral health literacy (Beta = 0.119, 95%CI = 0.009, 0.150), educational level (Beta = 0.123, 95%CI = 0.103, 0.949), oral healthcare attitude (Beta = 0.258, 95%CI = 0.143, 0.333), and oral health services (Beta = 0.430, 95%CI = 0.298, 1.408). Conclusions: People with T2DM had good oral health status. People with T2DM with low oral health literacy, low attitude, and low level of oral health services were at a higher risk of poor oral healthcare behavior. [ABSTRACT FROM AUTHOR]

Sexual and gender minority (LGBT+) people face unique health disparities that must be considered by health-care providers to ensure equitable and inclusive care. Although traditionally LGBT+ health has not been integrated into neurology training, sexual orientation and gender identity have direct relevance to neurological health, driven by both systemic and interpersonal factors. In this Review, we summarize the evidence for associations between sexual orientation and gender identity with the prevalence and outcomes of various neurological conditions, including neurodegenerative diseases, epilepsy, stroke and neurodevelopmental disorders, among others. We describe important clinical considerations pertaining to LGBT+ people and recommend language and practices to promote inclusive care, as well as highlight gaps in need of further research and possible strategies to minimize these, including systematic collection of sexual orientation and gender identity and use of inclusive language. In this Review, the authors discuss the unique neurological health disparities faced by sexual and gender minority (LGBT+) people. The Review presents clinical considerations alongside language and practice recommendations to promote inclusive care, and highlights the gaps in need of further research. [ABSTRACT FROM AUTHOR]

The article discusses the need to reconsider the best practice models of substance use care for young people. It highlights the vulnerability of young people to the negative effects of substance use and the importance of early intervention. The article identifies barriers that young people face in accessing treatment services and suggests strategies to enhance the benefits young people can gain from engagement with services. These strategies include addressing socio-structural determinants of health, providing youth-friendly and flexible treatment services, improving the culture of existing mainstream services, addressing service gaps, promoting better service linkage and collaborative care models, implementing integrated and community-based approaches, and focusing on preventative care and harm reduction services. The article emphasizes the need for a comprehensive and holistic approach to substance use care for young people. [Extracted from the article]

Appropriate and timely first aid reduces morbidity in burns. This study aims to assess the knowledge of first aid in burns among healthcare workers (HCW) and nonhealthcare workers. (NHCW). A survey, distributed in both paper and Google survey formats, presented five sample cases with multiple-choice answers. Participants recorded the most suitable first aid management for each scenario. Correct answers were provided on completion. Out of the total 753 participants, only 89 (11.8%) got all five answers correct. 16% HCW and 6% NHCW could answer all 5 questions correctly (with a true HCW:NHCW ratio of 2.67:1). Providing care for individuals with burns substantially raised the probability of giving accurate responses (p = 0.0001). While attending the general First Aid Course did not affect the responses (p = 0.08), participation in the Burns First Aid Course demonstrated slightly improved results (p = 0.052). The scenario involving liquid petroleum gas leakage saw a high proportion of correct responses, likely influenced by media coverage. We find a clear need for adequate training in burns first aid due to low awareness among healthcare workers (HCW) and non-healthcare workers (NHCW). Factors such as participation in burn first aid courses and gaining firsthand experience in treating burns were found to be linked to improved knowledge of burns prevention and first aid. Utilizing various media channels could be a valuable strategy to reach a broader audience, especially in remote and inaccessible areas. • There is limited awareness of burns first aid and prevention among both healthcare and non-healthcare workers • Experience in treatment of burn injuries improves knowledge of burns first aid better than first aid training. • Efficient use of multimedia and technology enhances burns prevention and first aid knowledge, reaching remote areas. [ABSTRACT FROM AUTHOR]

The paper presents the results of an empirical research on the topic of personal data awareness, conducted through a survey of a representative sample of the Italian population. Considering five self-perceived levels of digital competence, we investigate the perception of digital footprints people leave online, how they act when apps and platforms demand to share personal data, and whether they are concerned about privacy issues. We discuss these topics and the research data in the light of theoretical frameworks regarding the emerging forms of new digital inequalities, which are broadening to include the awareness gaps, among different users, about how apps and online platforms collect and use personal data. [ABSTRACT FROM AUTHOR]

Background: Palliative care in low- or middle-income country (LMIC) humanitarian settings is a new area, experiencing a degree of increased momentum over recent years. The review contributes to this growing body of knowledge, in addition to identifying gaps for future research. The overall aim is to systematically explore the evidence on palliative care needs of patients and/or their families in LMIC humanitarian settings. Methods: Arksey and O'Malley's (Int J Soc Res Methodol. 8:19-32, 2005) scoping review framework forms the basis of the study design, following further guidance from Levac et al. (Implement Sci 5:1-9, 2010), the Joanna Briggs Institute (JBI) Peters et al. (JBI Reviewer's Manual JBI: 406-452, 2020), and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) from Tricco et al. (Ann Intern Med 169:467-73, 2018). This incorporates a five-step approach and the population, concept, and context (PCC) framework. Using already identified key words/terms, searches for both published research and gray literature from January 2012 to October 2022 will be undertaken using databases (likely to include Cumulative Index of Nursing and Allied Health (CINAHL), MEDLINE, Embase, Global Health, Scopus, Applied Social Science Index and Abstracts (ASSIA), Web of Science, Policy Commons, JSTOR, Library Network International Monetary Fund and World Bank, Google Advanced Search, and Google Scholar) in addition to selected pre-print sites and websites. Data selection will be undertaken based on the inclusion and exclusion criteria and will be reviewed at each stage by two reviewers, with a third to resolve any differences. Extracted data will be charted in a table. Ethical approval is not required for this review. Discussion: Findings will be presented in tables and diagrams/charts, followed by a narrative description. The review will run from late October 2022 to early 2023. This is the first systematic scoping review specifically exploring the palliative care needs of patients and/or their family, in LMIC humanitarian settings. The paper from the review findings will be submitted for publication in 2023. [ABSTRACT FROM AUTHOR]

Introduction: Prophylaxis has become standard of care for all persons with haemophilia (PWH) with a severe phenotype. However, 'standard prophylaxis' with either factor or non‐factor therapies (currently only emicizumab available) is prohibitively expensive for much of the world. We sought to address the question of 'How much prophylaxis is enough?' and 'Can it be individualized?' and specifically 'Can emicizumab be individualized?'. Methods: We reviewed the literature on prophylaxis in haemophilia since its inception in the 1950s to the present, the development of more and less intense factor prophylaxis regimens and their outcomes and additionally the published outcomes of prophylaxis with low dose emicizumab. Results: What these experiences collectively show is that low dose emicizumab does result in significant benefits to patients whilst being much less expensive than a "one size fits all" emicizumab prophylaxis approach. We also took note that some non‐factor therapies still in development are individualized given that high doses of these can potentially put patients at risk. Conclusions: Prophylaxis is now clearly accepted as standard of care for PWH with a severe phenotype but now in a very short time a large assortment of different treatment options for prophylaxis have become/are becoming available and the haemophilia community will need to determine how to best use these recognizing that no 'one treatment fits all'. [ABSTRACT FROM AUTHOR]

This study aims to compare the mastery of competencies in assisting the LGBT+ population of Brazilian health professionals. Data collection occurred in a face-to-face and virtual manner, in the first semester of 2018. The health professionals answered a socio-demographic and functional questionnaire, in addition to the questionnaire Measurement of Training Needs for Health Care for the LGBT+ Public. The data was analyzed using Mann-Whitney and Chi-square tests. The project research was submitted to and approved by the IMED Research Ethics Committee (CAAE 69116917.6.0000.5319). The sample (n= 380) was made up mostly of psychologists (42.3%), female (81%), heterosexual (73.2%), aged between 26 and 35 years (36%), Catholic (41%), living in the south region (36.9%), and working in the profession for ten years or more (34.3%). Skills gaps on the LGBT+ theme was identified, especially in topics such as "approach to the patient's sexuality," "interference of religious beliefs in care," "care with the genitalia and breast of the trans individual," among others. Professionals trained in psychology and non-heterosexuals had a greater mastery of the theme than the others. The fragmentation of knowledge and skills hinders the full and equal access to the health system, and continued educational actions are recommended. [ABSTRACT FROM AUTHOR]

Many sources document problems that jeopardize the trustworthiness of systematic reviews. This is a major concern given their potential to influence patient care and impact people's lives. Responsibility for producing trustworthy conclusions on the evidence in systematic reviews is borne primarily by authors who need the necessary training and resources to correctly report on the current knowledge base. Peer reviewers and editors are also accountable; they must ensure that systematic reviews are accurate by demonstrating proper methods. To support all these stakeholders, we attempt to distill the sprawling guidance that is currently available in our recent co‐publication about best tools and practices for systematic reviews. We specifically address how to meet methodological conduct standards applicable to key components of systematic reviews. In this complementary invited review, we place these standards in the context of good scholarship principles for systematic review development. Our intention is to reach a broad audience and potentially improve the trustworthiness of evidence syntheses published in the developmental medicine literature and beyond. [ABSTRACT FROM AUTHOR]

Introduction: The global and Albanian populations of elderly people are steadily increasing. It is estimated that the number of elderly adults requiring care in Albania will rise from 90.9 thousand to 130.4 thousand by 2030. Despite the envisaged increase in the number and life expectancy of the elderly population in Albania, which will result in an increased demand for nursing care, little is known about the difficulties and challenges that nurses face while providing care for elderly Albanian individuals. Aim: To explore the difficulties and challenges nurses experience while caring for elderly people in Albanian eldercare institutions. Methods: The study employed a qualitative design using purposive sampling of 20 nurses in 8 eldercare institutions who participated in face-to-face semi-structured interviews. The audio-recorded interviews were transcribed and subsequently subjected to analysis using Graneheim and Lundman's qualitative conventional content analysis. Data analysis was supported by the qualitative data analysis software MAXQDA 2020. The reporting of this study followed the consolidated criteria for reporting qualitative research (COREQ) checklist. Results: Five key categories emerged from data analysis: (1) professional difficulties, (2) educational difficulties, (3) relationship challenges, (4) increased mental stress, and (5) participation in advocacy. This study showed that nursing staff experienced many barriers, challenges, and unmet needs when implementing care for elderly people in long-term care facilities. Conclusion: The findings indicate that nurses working in eldercare institutions faced significant challenges in caring for elderly people. Nurses need more legal, financial, educational, and emotional support. The study indicates that more organizational and national support is necessary for nursing staff to care for elderly people in eldercare Albanian institutions properly. Eldercare institution leaders need to recognize the importance of their role in overcoming the barriers and providing adequate support for their staff in caring for elderly people. [ABSTRACT FROM AUTHOR]

The increasing datafication of social life has led to a growing body of research on data work which focusses on new data practices like self-tracking, new professions like data analysts or new occupational roles. In these new types of data work, people develop strong affective relations to data, and caring for data (quality) is key. This attention to 'spectacular' data work however leads to an important oversight: Much of the data work in everyday organisational practice is done by workers 'somehow', in addition to and alongside their existing tasks. This article sets out to better understand this mundane data work. It asks: Why and how do people in organisations care for data? Based on two qualitative case studies, we present the concept of data care arrangements. Data care arrangements are configured through the ascription of values to (specific) data sets and the work of generating, maintaining, and repairing data. This data care work is not necessarily homogeneous in organised settings but can become stabilised in data care arrangements. Thus, the notion of data care arrangements underlines that data in everyday organisational practice are not an object of care per se, but that data care is an accomplishment. [ABSTRACT FROM AUTHOR]

Background: Adequate implementation of infection prevention and control (IPC) in residential care facilities (RCFs) for people with intellectual and developmental disabilities (IDDs) is crucial to safeguarding this vulnerable population. Studies in this field are scarce. This study aimed to identify perceived barriers to and facilitators of IPC among professionals working in these settings, along with recommendations to improve IPC, to inform the development of targeted interventions. Methods: We administered an online questionnaire to 319 professionals from 16 Dutch RCFs for people with IDDs (March 2021-March 2022). Perceived multilevel barriers and facilitators (guideline, client, interpersonal, organisational, care sector, and policy level) were measured on a 5-point Likert scale (totally disagree-totally agree). Recommendations were assessed using a 5-point Likert scale (not at all helpful-extremely helpful), supplemented by an open-ended question. Barriers, facilitators, and recommendations were analysed by descriptive statistics. Open answers to recommendations were analysed through thematic coding. Results: Barriers to IPC implementation included the client group (e.g., lack of hygiene awareness) (63%), competing values between IPC and the home-like environment (42%), high work pressure (39%), and the overwhelming quantity of IPC guidelines/protocols (33%). Facilitators included perceived social support on IPC between professionals and from supervisors (90% and 80%, respectively), procedural clarity of IPC guidelines/protocols (83%), and the sense of urgency for IPC in the organisation (74%). Main recommendations included the implementation of clear IPC policies and regulations (86%), the development of a practical IPC guideline (84%), and the introduction of structural IPC education and training programmes (for new staff members) (85%). Professionals also emphasised the need for IPC improvement efforts to be tailored to the local care context, and to involve clients and their relatives. Conclusions: To improve IPC in disability care settings, multifaceted strategies should be adopted. Initial efforts should involve clients (and relatives), develop a practical and context-specific IPC guideline, encourage social support among colleagues through interprofessional coaching, reduce workload, and foster an IPC culture including shared responsibility within the organisation. [ABSTRACT FROM AUTHOR]

Introduction: Considering the advances in haemophilia management and treatment observed in the last decades, a new set of value‐based outcome indicators is needed to assess the quality of care and the impact of these medical innovations. Aim: The Value‐Based Healthcare in Haemophilia project aimed to define a set of clinical outcome indicators (COIs) and patient‐reported outcome indicators (PROIs) to assess quality of care in haemophilia in high‐income countries with a value‐based approach to inform and guide the decision‐making process. Methods: A Value‐based healthcare approach based on the available literature, current guidelines and the involvement of a multidisciplinary group of experts was applied to generate a set of indicators to assess the quality of care of haemophilia. Results: A final list of three COIs and five PROIs was created and validated. The identified COIs focus on two domains: musculoskeletal health and function, and safety. The identified PROIs cover five domains: bleeding frequency, pain, mobility and physical activities, Health‐Related Quality of Life and satisfaction. Finally, two composite outcomes, one based on COIs, and one based on PROIs, were proposed as synthetic outcome indicators of quality of care. Conclusion: The presented standard set of health outcome indicators provides the basis for harmonised longitudinal and cross‐sectional monitoring and comparison. The implementation of this value‐based approach would enable a more robust assessment of quality of care in haemophilia, within a framework of continuous treatment improvements with potential added value for patients. Moreover, proposed COIs and PROIs should be reviewed and updated routinely. [ABSTRACT FROM AUTHOR]

The authors describe the clinical relevance of the psychiatric concept of bidirectionality when caring for persons with comorbid disorders, and they propose a psychodynamic framework to guide the treatment of persons with vision loss and blindness. Since persons with vision loss have an increased risk of depressive and anxiety disorders, they recommend targeted screening, integrated services, and a biopsychosocial approach to clinical care. The psychoanalytic concept of aphanisis, first described by Ernest Jones and later developed by Lacan and Kohut, is briefly discussed. Common psychotherapy themes in the treatment of persons who experience vision loss from systemic illness include reactivation of memories of past traumas resulting in avoidance, social withdrawal, depressive states, catastrophic thinking, a sense of foreshortened future, anhedonia, and fear of disintegration and invisibility. Psychotherapy also serves to correct negative introjects from ableist societal attitudes. [ABSTRACT FROM AUTHOR]

A paucity of evidence is available to guide integration of specialist palliative care into burn care. This study's purpose was to develop consensus on referral criteria using a modified Delphi process. Content experts were defined as burn or palliative care providers in locations where the teams have collaborative history; published at least one manuscript or presented nationally on burn and palliative care collaboration; or nomination as having equivalent expertise. N = 202 eligible persons were identified; n = 43 participated in Iteration 1 and Iteration 3 retained 79%. Iteration 1 invited participants to rank published referral criteria on a 9-point Likert-style scale. Consensus was defined as an interquartile range ≤ 2. Consensus items with median scores ≤ 3 were dropped from further consideration. Consensus items with median scores ≥ 7 were considered to be important and excluded in Iteration 2. Iteration 2 which presented non-consensus items with their associated median (interquartile range) and the participant's own ranking from Iteration 1. Iteration 3 presented three models; participants ranked in order of preference and suggested revisions. Consensus was achieved on a final set of criteria for specialist palliative care for persons who sustain burn injuries. Future research should prospectively evaluate the criteria against meaningful outcomes. • Modified Delphi process to develop consensus on palliative care referral for burns. • Consensus was achieved on a final set of criteria for specialist palliative care. • Criteria segregated for mandatory consultation and discretionary consultation. [ABSTRACT FROM AUTHOR]

Background: Individuals suffering with addiction have historically experienced disproportionally high levels of stigma. The process of inpatient care for those with substance abuse disorder (SUD) is multifaceted, shaped by the interplay of human interactions within the healthcare team and overarching structural factors like policy. While existing literature predominantly addresses personal and interpersonal stigma, the influence of structural stigma on care delivery practices remains understudied. Our research aims to investigate the impact of structural stigma on care processes for individuals with SUD admitted to acute medicine units. Methods: We conducted a secondary analysis of observation notes and interview transcripts utilizing an analytic framework related to structural stigma adapted from previous research. Data was collected from June 2019 to January 2020 in 2 hospitals. 81 participants consented to observation and 25 to interviews. Interviews were conducted with patients (n = 8), healthcare staff (n = 16), and caregivers (n = 1). Results: Each aspect of care for people with SUD is adversely influenced by structural forms of stigma. There was evidence of a gap in accessing care and time pressures which deteriorated care processes. Structural stigma also manifested in the physical spaces designed for care and the lack of adequate resources available for mental health and addictions care. We found that structural stigma perpetuated other forms of implicit and explicit stigma. Conclusions: Structural stigma and other forms of stigma are interconnected. Improving care for people with SUD in hospital settings may require addressing structural forms of stigma such as how physical spaces are designed and how mental healthcare is integrated with physical healthcare within inpatient settings. [ABSTRACT FROM AUTHOR]

In this study, we examine the relationship between formal care provision and informal care receipt from within the household for people over 75 years old using data from the British Household Panel Survey between 1991 and 2009. To address potential concerns about endogeneity of formal care we use a 'spatial lag' instrumental variable. We find a negative and statistically significant effect of formal care provision on informal care receipt from within the household, suggesting a substantial degree of substitutability between these two modes of care. These findings provide grounds for estimates of savings in the cost of informal care enabled by spending on formal care, which is important in light of the effects of the caregiving burden and associated responsibilities on carer's labour market participation. [ABSTRACT FROM AUTHOR]

Background: Social care is vital to quality of life for people with young onset dementia and their families. Yet care is hugely variable, frequently lacking and poorly coordinated. We aim to establish current practice in English social care for people with young onset dementia and co-produce evidence-based recommendations and resources for improvement. Methods and analysis: In Work-Package 1, we will gather qualitative data from 25 people with young onset dementia and/or main supporters residing in England. We will ask them about their experiences of social care (broadly defined, including independent and voluntary sector provision) and suggestions for improvement. In Work-Package 2, we will conduct a short on-line survey with a wide range of staff with a role in adult social care in England. We will find out about current awareness, knowledge and practice and suggestions for improvements. Quantitative and qualitative analysis will provide a picture of current practice. In Work-Package 3, we will use convergence analysis to synthesise the findings from Work-Packages 1 and 2 and present the findings to a stakeholder workshop, to identify feasible priorities for improvement. We will establish what is already known about good practice relating to these key priorities using a scoping review and interviews with professionals. This knowledge will then feed into the co-production of resources and recommendations with key stakeholders to improve social care for people with young onset dementia and their families. Discussion: This study seeks to address a gap in our understanding of social care provision for people with young onset dementia and develop recommendations and practical resources for improvements. The findings will help people with young onset dementia and supporters to receive higher quality social care. Trial registration: Study registration number:ISRCTN10653250. [ABSTRACT FROM AUTHOR]

For ordinary people in late-socialist China, the good life seems to be singularly shaped: in the future and the elsewhere, it is oriented toward one's own well-being and the well-being of future generations. This article aims to open up discussion about the different possibilities that ordinary people have for shaping a good life, despite and within the restrictions caused by their limited possession of power or wealth. The exploration draws from my long-term ethnographic fieldwork on caogen gongyi 草根公益 (grassroots philanthropy) in southeast China. It shows that care for the well-being of people beyond one's immediate family in the form of organized charity and volunteerism offers opportunities for many ordinary people with limited resources to engage socially and politically in ways that are central to their experience of the good life in contemporary China. Unlike the better-off philanthropists and volunteers, whose philanthropic activities tend to enhance their status and dominance, the ordinary people presented in this article experience major tensions between providing for their family and caring for others in society, between ensuring the material conditions of the good life and being able to live an ethical life as a contributing member of society and to be socially recognized for doing so. Hence pursuing the good life can require extremely hard work and be emotionally draining for many ordinary people. Philanthropic engagement does not lead to substantial and sustainable material returns, yet the creative imaginations and public actions of ordinary people open up possibilities for valorizing life in social arenas, despite and within the prevailing economic valorization of life. [ABSTRACT FROM AUTHOR]

This study explored the experiences of children and young people in the Mockingbird Family, South Australia, during implementation and roll-out. The study involved semi-structured interviews with a diverse group of 54 participants, including 21 children and young people, 12 foster carers, and 14 agency workers. Thematic analysis, with the application of Axel Honneth's recognition theory, showed the Mockingbird Family model to validate the emotional, cognitive, and social support needs of children and young people. Through interconnected experience, the nurturing of care and the promotion of rights-based, holistic approaches were crucial for achieving social recognition, dignity, and developmental growth. The study indicates the potential benefits of the Mockingbird Family model for addressing the needs of children and young people in care. The research suggests that a community-based support model such as the Mockingbird Family should be considered in child welfare practices. However, further research is necessary to fully understand the model's long-term effects and justify its integration into wider child welfare policies. [ABSTRACT FROM AUTHOR]

The article focuses on the constitutional implications of the current trend of hospital closures, particularly in relation to the obligation of the state to provide effective protection of life and health as outlined in Article 2(2) of German Basic Law (GG). Topics include the constitutional basis of Article 2(2) GG as a defensive right against state interference, the distinction between protective and performance rights, and potential legal arguments for ensuring proximity to emergency care.

Exposure to (virtual) natural environments may encourage people to care about environmental protection and to engage in pro‐environmental behaviour. Previous research on this effect produced inconsistent results, suggesting that it may depend on the type of nature and behaviour under study. In the present study (N = 266), we investigated nature exposure effects on effortful pro‐environmental behaviour in an online experiment. After watching pictures of either intact or destroyed natural environments, participants could exert voluntary extra efforts to generate real donations to an environmental organisation. In comparison to the intact nature condition, participants exerted significantly more effort for environmental protection after being exposed to pictures of destroyed nature. No clear differences were observed between the nature exposure conditions and a no‐picture control condition. These findings illustrate the complexity of nature exposure effects and suggest that different types of nature exposure may differentially affect people's pro‐environmental behaviour. [ABSTRACT FROM AUTHOR]

Introduction: Non-professional care partners play an important and often evolving role in the care of persons living with Alzheimer's disease (PLWAD). We investigated two elements of the care partner experience, namely time and strain incurred by care partners providing care to PLWAD across the severity spectrum. Methods: Data gathered from the Alzheimer's Disease Patient and Caregiver Engagement (AD PACE) What Matters Most (WMM) study series were analyzed to determine how much time care partners spent providing care to PLWAD based on where the care recipients lived. Additionally, quantitative assessments of weekly hours providing care and the strain experienced by care partners were conducted using the UsAgainstAlzheimer's A-LIST Insights Series survey, which included the Modified Caregiver Strain Index (MCSI). Finally, a targeted literature review was conducted to contextualize findings and characterize the existing literature landscape. Results: Care partners in the AD PACE WMM studies (n = 139) spent significantly more hours providing care for recipients who lived with someone (mean ± standard deviation [SD], 57.3 ± 44.3 h/week) than for recipients who lived alone (26.0 ± 12.0 h/week) (P = 0.0096) or lived in assisted living/nursing home (23.6 ± 14.4 h/week) (P = 0.0002). In the A-LIST Insights Series survey, care partners provided an overall mean (± SD) 58.1 ± 53.0 h of direct care each week, with caregiving hours increasing with increasing severity of AD/AD-related dementias (AD/ADRD). Additionally, care partners for recipients with mild (n = 14), moderate (n = 111), and severe AD/ADRD (n = 91) had overall mean MCSI scores of 9.0 ± 3.8 (range 2–14), 13.3 ± 4.8 (range 4–23), and 17.5 ± 5.3 (range 4–26), respectively, with higher scores suggesting greater care partner strain. Conclusions: Persons living with AD require increasing levels of care along the spectrum of disease, and even individuals with early disease need care from partners. Early interventions that slow progression of AD and programs that improve family function may have beneficial impact on the experiences of care partners for recipients with mild, moderate, or severe AD. [ABSTRACT FROM AUTHOR]

Background: Digital tools have the capacity to complement and enhance clinical care for young people at risk of suicide. Despite the rapid rise of digital tools, their rate of integration into clinical practice remains low. The poor uptake of digital tools may be in part due to the lack of best-practice guidelines for clinicians and services to safely apply them with this population. Methods: A Delphi study was conducted to produce a set of best-practice guidelines for clinicians and services on integrating digital tools into clinical care for young people at risk of suicide. First, a questionnaire was developed incorporating action items derived from peer-reviewed and grey literature, and stakeholder interviews with 17 participants. Next, two independent expert panels comprising professionals (academics and clinical staff; n = 20) and young people with lived experience of using digital technology for support with suicidal thoughts and behaviours (n = 29) rated items across two consensus rounds. Items reaching consensus (rated as "essential" or "important" by at least 80% of panel members) at the end of round two were collated into a set of guidelines. Results: Out of 326 individual items rated by the panels, 188 (57.7%) reached consensus for inclusion in the guidelines. The endorsed items provide guidance on important topics when working with young people, including when and for whom digital tools should be used, how to select a digital tool and identify potentially harmful content, and identifying and managing suicide risk conveyed via digital tools. Several items directed at services (rather than individual clinicians) were also endorsed. Conclusions: This study offers world-first evidence-informed guidelines for clinicians and services to integrate digital tools into clinical care for young people at risk of suicide. Implementation of the guidelines is an important next step and will hopefully lead to improved uptake of potentially helpful digital tools in clinical practice. [ABSTRACT FROM AUTHOR]

Background: Il Paese Ritrovato is an Italian nursing home founded in 2018, it is based on the Alzheimer village model and admits people with mild-to-moderate dementia. Objective: Describe the impact of the SARS-CoV-2 pandemic on people living at Il Paese Ritrovato through a Comprehensive Geriatric Assessment (CGA) regularly administered prior to and during the pandemic. Methods: We explored the effects of a person-centered approach. We assessed 64 subjects (enrolled and followed between June 2018 and December 2020), who underwent at least 18 months of observation prior to the pandemic. Each subject was evaluated using a CGA on admission time (T0) and at defined time-points: T6, T12, T18. One last CGA evaluation was performed during the SARS-CoV-2 pandemic (TCovid-19). Temporal trends during T0–T18, and differences between T18 and TCovid-19 were calculated. Results: The mean age was 82 years with a prevalence for females (77.0%) and Alzheimer's disease diagnosis (60%). Psychiatric and behavioral disorders were the most common conditions (80%). We utilized a nonpharmacological approach aimed at promoting the residents' overall wellbeing and observed satisfactory performance during the first 18 months. In comparison with the pre-pandemic period, TCovid-19 enlightened +11.7% use of antidepressants and a decline of Mini-Mental State Examination mean values (not statistically significant), while engagement in activities dropped. Conclusions: The pandemic may have disrupted the existing model of care, but at the same time, it confirmed that the Il Paese Ritrovato approach, which encompasses symptoms improvement and multicomponent support, is in fact beneficial. [ABSTRACT FROM AUTHOR]

Background: Multiple long-term conditions—the co-existence of two or more chronic health conditions in an individual—present an increasing challenge to populations and healthcare systems worldwide. This challenge is keenly felt in hospital settings where care is oriented around specialist provision for single conditions. The aim of this scoping review was to identify and summarise published qualitative research on the experiences of hospital care for people living with multiple long-term conditions, their informal caregivers and healthcare professionals. Methods: We undertook a scoping review, following established guidelines, of primary qualitative research on experiences of hospital care for people living with multiple long-term conditions published in peer-reviewed journals between Jan 2010 and June 2022. We conducted systematic electronic searches of MEDLINE, CINAHL, PsycInfo, Proquest Social Science Premium, Web of Science, Scopus and Embase, supplemented by citation tracking. Studies were selected for inclusion by two reviewers using an independent screening process. Data extraction included study populations, study design, findings and author conclusions. We took a narrative approach to reporting the findings. Results: Of 8002 titles and abstracts screened, 54 papers reporting findings from 41 studies conducted in 14 countries were identified as eligible for inclusion. The perspectives of people living with multiple long-term conditions (21 studies), informal caregivers (n = 13) and healthcare professionals (n = 27) were represented, with 15 studies reporting experiences of more than one group. Findings included poor service integration and lack of person-centred care, limited confidence of healthcare professionals to treat conditions outside of their specialty, and time pressures leading to hurried care transitions. Few studies explored inequities in experiences of hospital care. Conclusions: Qualitative research evidence on the experiences of hospital care for multiple long-term conditions illuminates a tension between the desire to provide and receive person-centred care and time pressures inherent within a target-driven system focussed on increasing specialisation, reduced inpatient provision and accelerated journeys through the care system. A move towards more integrated models of care may enable the needs of people living with multiple long-term conditions to be better met. Future research should address how social circumstances shape experiences of care. [ABSTRACT FROM AUTHOR]

Over the last decade, lesbian, gay, bisexual, transgender, and intersex (LGBTI) policies have been developed in Catalonia (Spain). This has resulted in official efforts to address the needs of LGBTI people in rural areas of a territory that, until recently, had neglected these needs. In this article, through mixed methods research, we analyze the knowledge, beliefs and practices of health care and social service professionals in the region of La Selva. The results show how, despite professionals’ desire to provide good care for LGBTI people, ignorance, prejudice and cisheterocentric outlooks limit professional practice. [ABSTRACT FROM AUTHOR]

• This is the second of four papers updating standards for the care of pwCF. • This paper focuses on establishing and maintaining health. • Guidance is evidence-based with wide engagement from across the CF community. • The guidance reinforces the importance of a multi-disciplinary CF team. • An active and healthy lifestyle is key, which includes avoiding e-cigarettes. This is the second in a series of four papers updating the European Cystic Fibrosis Society (ECFS) standards for the care of people with CF. This paper focuses on establishing and maintaining health. The guidance is produced using an evidence-based framework and with wide stakeholder engagement, including people from the CF community. Authors provided a narrative description of their topic and statements, which were more directive. These statements were reviewed by a Delphi exercise, achieving good levels of agreement from a wide group for all statements. This guidance reinforces the importance of a multi-disciplinary CF team, but also describes developing models of care including virtual consultations. The framework for health is reinforced, including the need for a physically active lifestyle and the strict avoidance of all recreational inhalations, including e-cigarettes. Progress with cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapy is reviewed, including emerging adverse events and advice for dose reduction and interruption. This paper contains guidance that is pertinent to all people with CF regardless of age and eligibility for and access to modulator therapy. [ABSTRACT FROM AUTHOR]

Background: Numerous studies have highlighted the inequitable access to medical and psychiatric care that people experiencing homelessness (PEH) face, yet the surgical needs of this population are not well understood. We sought to assess evidence describing surgical care for PEH and to perform a thematic analysis of the results. Methods: Ovid MEDLINE, Embase, and Web of Science were searched using the terms "surgery" AND "homelessness." Grey literature was also searched. We used a stepwise scoping review methodology, followed by thematic analysis using an inductive approach. Results: We included 104 articles in our review. Studies were included from 5 continents; 63% originated in the United States. All surgical specialties were represented with varying surgical conditions and procedures for each. Orthopedic surgery (21%) was the most frequently reported specialty. Themes identified included characteristics of PEH receiving surgical care, homeless-to-housed participants, interaction with the health care system, educational initiatives, barriers and challenges, and interventions and future strategies. Conclusion: We identified significant variation and gaps, representing opportunities for further research and interventions. Further addressing the barriers and challenges that PEH face when accessing surgical care can better address the needs of this population. [ABSTRACT FROM AUTHOR]

Substance use disorders are a risk factor for poor oral health which in turn impacts quality of life. Resultant oral problems contribute to chronic illness, premature mortality, social stigma, embarrassment and reduced opportunities for employment and social interaction. Providing dental services to people with substance use disorders is often difficult due to high rates of oral disease, anxiety, behavioural and drug use changes, and lifestyle factors. Previous studies have demonstrated that alcohol and other drug service clients find accessing and navigating oral health services complex and suggest a multidisciplinary care approach to improve outcomes. In this commentary, we describe individual and structural barriers that limit the use of oral health care among people with substance use disorders, alcohol and other drug clinicians' challenges to integrating oral health into their practice and identify key issues for oral health services in delivering care. We draw on our experience to recommend a multidisciplinary approach be used to develop strategies in order to increase access to oral health services at a standard similar to the general population for clients of alcohol and other drug services. [ABSTRACT FROM AUTHOR]

Background: People who use alcohol and/or drugs (PWUAD) are at higher risk of infectious disease, experiencing stigma, and recurrent hospitalization. Further, they have a higher likelihood of death once hospitalized when compared to people who do not use drugs and/or alcohol. The use of harm reduction strategies within acute care settings has shown promise in alleviating some of the harms experienced by PWUAD. This review aimed to identify and synthesize evidence related to the implementation of harm reduction strategies in acute care settings. Methods: A scoping review investigating harm reduction strategies implemented in acute care settings for PWUAD was conducted. A search strategy developed by a JBI-trained specialist was used to search five databases (Medline, Embase, CINAHL, PsychInfo and Scopus). Screening of titles, abstracts and full texts, and data extraction was done in duplicate by two independent reviewers. Discrepancies were resolved by consensus or with a third reviewer. Results were reported narratively and in tables. Both patients and healthcare decision makers contributing to the development of the protocol, article screening, synthesis and feedback of results, and the identification of gaps in the literature. Findings: The database search identified 14,580 titles, with 59 studies included in this review. A variety of intervention modalities including pharmacological, decision support, safer consumption, early overdose detection and turning a blind eye were identified. Reported outcome measures related to safer use, managed use, and conditions of use. Reported barriers and enablers to implementation related to system and organizational factors, patient-provider communication, and patient and provider perspectives. Conclusion: This review outlines the types of alcohol and/or drug harm reduction strategies, which have been evaluated and/or implemented in acute care settings, the type of outcome measures used in these evaluations and summarizes key barriers and enablers to implementation. This review has the potential to serve as a resource for future harm reduction evaluation and implementation efforts in the context of acute care settings. [ABSTRACT FROM AUTHOR]

Background: Persons with spinal cord injury (SCI) living in the community often require care. The boundaries between professional home care and informal care are blurred, and it is unclear who the typical user of home care is. The objective of this study was to describe the characteristics of persons with SCI using professional home care in Switzerland, determine the frequency of home care visits, and investigate the association of sociodemographic factors, SCI-specific characteristics, secondary health conditions, and functional independence with the use of home care. Methods: We used cross-sectional data from the 2017 community survey of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). Out of 3,959 eligible individuals 1294 completed the questionnaire and were included in the analysis (response rate 33%). Using descriptive statistics, differences between home care users and non-users as well as the frequency of home care visits were investigated. The association between sociodemographic factors, SCI-specific characteristics, secondary health conditions, functional independence and the use of home care was analyzed using multivariable logistic regression. Multiple imputation was used to account for missing data. Results: Of 1,294 participants, 280 (22%) used professional home care. The median weekly professional home care duration was 6 h (Q1 = 2, Q3 = 12). More home care was used in persons with lower functional independence (Odds ratio (OR) 0.30 per 10 unit decrease in the Spinal Cord Independence Measure, 95%-Confidence interval (CI) 0.24–0.37), fewer secondary health conditions (OR 0.96 per unit Spinal Cord Injury Secondary Conditions Scale, 95%-CI 0.94–0.99), tetraplegia (OR 2.77, 95%-CI 1.92–4.00), women (OR 2.42, 95%-CI 1.70–3.43), higher age (OR 1.22 per 10 years increase, 95%-CI 1.06–1.39), living alone (OR 2.48, 95%-CI 1.53–4.03), and those receiving support from an informal caregiver (OR 1.88, 95%-CI 1.27–2.77). Conclusions: This is the first study to examine the use of professional home care from the perspective of persons with SCI in Switzerland. Lower functional independence strongly predicts increased home care use. The findings showed that professional home care complements informal care and is more likely to be used by individuals with SCI who live alone, have tetraplegia, and are female. [ABSTRACT FROM AUTHOR]

Background: Adult Day care centres provide an important aspect of care provision through all phases of the dementia illness from diagnosis to the end of life (Dabelko HI 2008) supporting the well-being of both older people living with dementia and their care partners. Services within adult day care settings are designed to provide biopsychosocial health benefits to participants as well as care partner respite. Objective: To examine research studies, literature reviews and grey literature and identify and map the literature on psychosocial interventions used in day care services for older people living with dementia and chart their use, evaluation and outcomes. The research review question is "what are the psychosocial interventions used in day care service for older people living with dementia?" Psychosocial interventions are important non-pharmacological interventions which support people's wellbeing. Methods: Inclusion/Exclusion criteria were identified and guided the search strategy. Participants were people aged 60 years and over living with dementia attending day care services. The use of psychosocial interventions for this cohort was the focus of the review. Databases were searched (Cochrane Reviews, CINAHL, Embase, Medline EBSCO, Medline Ovid, Medline PubMed, PsycINFO, Scopus, Open Grey, Lenus and WHO Global Index Medicus databases) using keywords/terms with Boolean operators from 2011 to 2023. Rayyan was used to extract and manage the data. Results: The findings present a narrative and charting of the data from the 45 papers that met the review criteria, and this data is mapped onto the five objectives. Within this review, interventions were grouped into five broad types: nature (n = 6 papers), memory/cognitive (n = 11 papers), social (n = 17 papers), animal (n = 4 papers), or physical/sensory (n = 7 papers) based interventions. Conclusions: This review has illustrated the wide variety in the types, range and facilitation of psychosocial interventions within adult day care services. This review highlights the potential benefits of these interventions. However, findings must be considered in the context that many were provided as brief intervention studies with little evidence of continuation after the study and further research is required given the complex and diverse range of interventions. Results will be of interest to practitioners planning to implement or evaluate psychosocial interventions used in day care services for older people living with dementia. [ABSTRACT FROM AUTHOR]

Background: Despite the great confidence of Western governments in the principles of New Public Management (NPM) and its ability to stimulate "healthcare entrepreneurship", it is unclear how policies seeking to reform healthcare services provoke such entrepreneurship in individual institutions providing long-term healthcare. This study examines such situated responses in a Dutch nursing home for elderly people suffering from dementias such as Alzheimer's disease. Methods: A four-year inductive longitudinal single-case study has been conducted. During this time period, the Dutch government imposed various NPM-based healthcare reforms and this study examines how local responses unfolded in the nursing home. Through interviews conducted with managers, administrators and supporting staff, as well as the examination of a large volume of government instructions and internal documents, the paper documents how these reforms resulted in several types of entrepreneurship, which were not all conducive to the healthcare innovations the government aspired to have. Results: The study records three subsequent strategies deployed at the local level: elimination of healthcare services; non-healthcare related collaboration with neighboring institutions; and specialization in specific healthcare niches. These strategies were brought about by specific types of entrepreneurship – two of which were oriented towards the administrative organization rather than healthcare innovations. The study discusses the implications of having multiple variations of entrepreneurship at the local level. Conclusion: Governmental policies for healthcare reforms may be more effective, if policymakers change output-based funding systems in recognition of the limited control by providers of long-term healthcare over the progression of clients' mental disease and ultimate passing. [ABSTRACT FROM AUTHOR]

Background: In response to concerns about high hospital mortality rates, patient and carer complaints, a Mid Staffordshire NHS Foundation Trust public inquiry was conducted at the request of the UK government. This inquiry found serious failures in the quality of basic care provided and as a consequence, recommended that patients should have more regular visits, organised at predictable times from nursing staff. Intentional rounding, also known as nursing ward rounds, was widely adopted to meet this need. Objective: To test, refine or refute eight programme theories to understand what works, for whom, and in what circumstances. Setting: Six wards (older people and acute wards) in three NHS trusts in England. Participants: Board level and senior nursing managers (N = 17), nursing ward staff (N = 33), allied health and medical professionals (N = 26), patients (N = 34) and relatives (N = 28) participated in an individual, in-depth interview using the realist method. In addition, ward-based nurses (N = 39) were shadowed whilst they conduced intentional rounds (240 rounds in total) and the direct care of patients (188 h of patient care in total) was observed. Methods: The mixed methods design included: Phase (1) Theory development - A realist synthesis was undertaken to identify any programme theories which were tested, refined and/or refuted, using data from phases 2 and 3; Phase (2) A survey of all English NHS acute Trusts; Phase (3) Six case studies of wards involving realist interviews, shadowing and non-participant observations, analysis of ward outcome and cost data; and Phase (4) Synthesis of findings from phases 1, 2 and 3. Results: The realist synthesis identified eight programme theories of intentional rounding: 'Consistency and comprehensiveness', 'Accountability', 'Visibility of nurses', 'Anticipation', 'Allocated time to care', 'Nurse-patient relationships', 'Multi-disciplinary teamwork and communication' and 'Patient empowerment'. Key findings showed that of the original eight programme theories of intentional rounding, only two partially explained how the intervention worked ('Consistency and comprehensiveness' and 'Accountability'). Of the remaining six programme theories, the evidence for two was inconclusive ('Visibility of nurses' and 'Anticipation') and there was no evidence for four ('Allocated time to care'; 'Nurse-patient relationships'; 'Multi-disciplinary teamwork and communication'; and 'Patient empowerment'). Conclusions: This first theory-informed evaluation of intentional rounding, demonstrates that the effectiveness of intentional rounding in the English healthcare context is very weak. Furthermore, the evidence collected in this study has challenged and refuted some of the underlying assumptions about how intentional rounding works. This study has demonstrated the crucial role context plays in determining the effectiveness of an intervention and how caution is needed when implementing interventions developed for the health system of one country into another. [ABSTRACT FROM AUTHOR]

Background: Families are the primary caregivers for persons with intellectual disability (ID), offering informal support to ensure community living. Ensuring families are adequately supported is key to reduce the financial, physical, mental and social toll which long-standing inadequately supported care giving may evoke. Respite care is such a support service offered to caregivers and care-recipients with ID. Objective: Part of a larger study aimed at developing a respite care service framework for persons with ID for South Africa, the review aimed to elucidate what principles and practices inform current respite care services for this population globally. Method: The Joanna Briggs Institute (JBI) scoping review framework guided the review. Databases were searched using key and surrogate terms for relevant literature published from 2006 to 2021. Results: Thirty-one sources met the inclusion criteria from 417 screened sources of evidence. These were published between 2006 and 2020, and included grey and peer-reviewed articles, the latter mostly mixed design. Information on respite care service characteristics, principles, practices, guidelines, evaluations and impacts were found for high- but not low-and-middle-income countries (LMICs). Conclusion: There is an existing knowledge base that can be drawn on to inform the development of quality respite care. The lack of published information on respite care in LMICs necessitates further research to ensure contextually appropriate respite care developments in these settings. Contribution: This study contributes to the knowledge base on respite care for persons with ID and points out the research gap in LMICs. [ABSTRACT FROM AUTHOR]

On the evening of 25 May 2020, White Minneapolis police officer, Derek Chauvin, killed George Floyd, a Black man, by kneeling on his neck for almost 10 min. Floyd's death sparked one of the most significant protests in the US. Moreover, it forced a global conversation about reckoning with race, social justice, diversity, equity, and inclusion in society. Sport was used as a platform to address many of the social ills that plagued humanity in the US and other nations. Floyd's tragic death created an alarm for chaplains across vocational strands, including sports chaplains, to immerse themselves in painful and often awkward conversations surrounding race, diversity, equity, and inclusion. Three years after the demise of Floyd, the task that lies ahead is to continue compassionately the work of recognizing harm, promoting reconciliation, and engaging in the collective work of diversity, equity, and inclusion. Furthermore, advancing conversations about moral harm, fairness, relevant theologies, and culturally responsive caregiving strategies must be given primacy. [ABSTRACT FROM AUTHOR]

At the heart of capitalism is a contradiction between capital's need for value-producing labor, including the commodification of care work and care products, and capitalists' pursuit of profit at all costs, including the value of wages and the life and wellbeing of workers. The family is entangled in this contradiction insofar as its members, and particularly its female members, are encouraged to care for their children and for their dependent parents without (adequate) compensation out of love or duty, at the same time as they are immersed in and held up to standards of autonomy and self-care. In this article, I unpack this entanglement with respect to men and women's care for their children and for their dependent parents in Germany. I argue that family members live out a structural contradiction in the reproduction of capitalism as a personal and family conflict and assume its fallouts as their personal failures. This makes the family relationships that center on care singularly excessive and family members prone to questioning their commitment, sensibility, and competence as mothers and fathers and as daughters and sons. [ABSTRACT FROM AUTHOR]

The human enjoyment of fun is meaningful and yet optional. Fun is meaningful in the sense that fun is a celebration of goodness. Fun is optional in the sense that fun is an activity of responding to goods already realized more than it is an activity expected to produce these goods. Despite its optional character, fun is important within pastoral work, for fun can be employed as a caring practice, celebrating goodness within community. Fun is an activity that is related to, but distinct from, play. Play tends toward the development of self-concept, body, and social roles, whereas fun celebrates these goods. While overindulgence can render fun trivial, fun at the right moment may be an avenue of care and nurture, allowing persons to recognize and celebrate God's good gifts within a community. Within the Christian tradition, fun, done well, will ideally approach a shared sense of joy. [ABSTRACT FROM AUTHOR]

Background: Behavioral and psychological symptoms of dementia (BPSD) bring complexity in the clinical management of people with dementia; therefore, it is important to evaluate different models of care, such as Special Care Units (SCU-B).∥ Objective: To evaluate the SCU-B effectiveness toward alleviating BPSD and improving the quality of life (QoL) of patients and their caregivers.∥ Methods: ReCAGE was a multicenter, controlled, longitudinal study where 508 patients with BPSD were enrolled in two cohorts: 262 patients from centers endowed with a SCU-B, and 246 from centers without SCU-B. Statistical analyses included factorial ANCOVA for comparison among centers. The primary endpoint was effectiveness of the SCU-B, measured through the Neuropsychiatric Inventory (NPI) changes. Secondary endpoints were change in QoL of patients and caregivers, and the tertiary endpoint was time to nursing home admission.∥ Results: The NPI scores decreased in both arms, with a statistically significant difference from baseline to 36 months (p < 0.0001) in both cohorts. Over time, NPI decreased more steeply during the first year in the SCU-B arm, but in the following two years the slope was clearly in favor of the control arm. This different pattern of the two cohorts reached statistical significance at the interaction "cohort by time" (p < 0.0001). Conflicting results were found regarding the outcomes of quality of life, while there were no differences in time to institutionalization in both cohorts.∥ Conclusion: The RECage study did not confirm the long-term superiority of the pathway comprising a SCU-B. A post-hoc analysis revealed data supporting their acute effectiveness during behavioral crises. [ABSTRACT FROM AUTHOR]

Hepatitis B virus (HBV) care cascade characterisation is important for monitoring HBV elimination progress. This study evaluated care cascade and factors associated with HBV DNA testing and treatment in New South Wales, Australia. HBV care cascade were determined through linkage of HBV notifications (1993–2017) to Medicare and pharmaceutical benefits schemes (2010–2018). Timely HBV DNA testing was within 4 weeks of HBV notification. Multivariate Cox proportional hazards regression evaluated factors associated with HBV DNA testing and treatment. Among 15,202 people with HBV notification, 10,479 (69%) were tested for HBV DNA. A total of 3179 (21%) initiated HBV treatment. HBV DNA testing was more likely among age ≥45 years (adjusted hazard ratio [aHR] 1.07, 95% CI: 1.02, 1.12), hepatocellular carcinoma (HCC) (aHR 1.23, 95% CI: 1.01, 1.50), coinfection (aHR 1.61, 95% CI: 1.23, 2.09), later notification (2014–2017) (aHR 1.21, 95% CI: 1.16, 1.26) and less likely among females (aHR 0.95, 95% CI: 0.91, 0.99), history of alcohol use disorder (AUD) (aHR 0.77, 95% CI: 0.66, 0.89), HCV coinfection (aHR.62, 95% CI: 0.55, 0.70) and Indigenous peoples (aHR 0.84, 95% CI: 0.71, 0.98). HBV treatment was associated with age ≥45 years (aHR 1.35, 95% CI: 1.24, 1.48), decompensated cirrhosis (aHR 2.07, 95% CI: 1.62, 2.65), HCC (aHR 2.96, 95% CI: 2.35, 3.74), HIV coinfection (aHR 4.27, 95% CI: 3.43, 5.31) and later notification (2014–2017) (aHR 1.37, 95% CI: 1.26, 1.47). HBV treatment was less likely among females (aHR 0.68, 95% CI: 0.63, 0.73) and Indigenous peoples (aHR 0.58, 95% CI: 0.42, 0.80). HBV DNA testing and treatment coverage have increased, but remain sub‐optimal among some key populations. [ABSTRACT FROM AUTHOR]

Background: Complex regional pain syndrome (CRPS) can be a debilitating pain condition with enduring physical, psychological and social impacts. CRPS is often poorly understood by healthcare professionals and management needs to be tailored to each individual's presentation. People with lived experience express difficulty in accessing reliable and meaningful information about the condition. This study aimed to co-create a trustworthy infographic to share information about the lived experience of CRPS. Methods: We adopted a seven-phase, iterative, participatory methodology to co-create the infographic. Potential infographic content was obtained from qualitative work investigating the lived experience of CRPS. Online consumer engagement (people with doctor diagnosed CRPS/their family, n =20) was used to prioritise content to be included in the infographic and then potential designs were sourced. The research team narrowed the selections down to two designs which were presented to consumers online for final selection (n =25) and refinement (n =34). Results: An infographic for understanding the lived experience of CRPS was completed using participatory design, providing a resource aligned to the needs of people with this condition. Using the Patient Education Materials Assessment Tool, the final infographic rated highly for understandability (92%) and participants indicated significant willingness to share this infographic with others (93%). Conclusion: A process of participatory design was an effective and efficient process for translation of evidence gathered from qualitative research into a trustworthy resource for people with CRPS and their support people. [ABSTRACT FROM AUTHOR]

Background: Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health, psychosocial and financial consequences. This study aimed to understand how care is coordinated for rare diseases in the United Kingdom. Methods: We undertook a national survey in the UK involving 760 adults affected by rare diseases, 446 parents/carers of people affected by rare diseases, and 251 healthcare professionals who care for people affected by rare diseases. Results: Findings suggested that a wide range of patients, parents and carers do not have coordinated care. For example, few participants reported having a care coordinator (12% patients, 14% parents/carers), attending a specialist centre (32% patients, 33% parents/carers) or having a care plan (10% patients, 44% parents/carers). A very small number of patients (2%) and parents/carers (5%) had access to all three—a care coordinator, specialist centre and care plan. Fifty four percent of patients and 33% of parents/carers reported access to none of these. On the other hand, a higher proportion of healthcare professionals reported that families with rare conditions had access to care coordinators (35%), specialist centres (60%) and care plans (40%). Conclusions: Care for families with rare conditions is generally not well coordinated in the UK, with findings indicating limited access to care coordinators, specialist centres and care plans. Better understanding of these issues can inform how care coordination might be improved and embrace the needs and preferences of patients and families affected by rare conditions. [ABSTRACT FROM AUTHOR]

Background: Paid caregivers (e.g., home health aides) care for individuals living at home with functional impairment and serious illnesses (health conditions with high risk of mortality that impact function and quality of life). Objective: To characterize those who receive paid care and identify factors associated with receipt of paid care in the context of serious illness and socioeconomic status. Design: Retrospective cohort study. Participants: Community-dwelling participants ≥ 65 years enrolled in the Health and Retirement Study (HRS) between 1998 and 2018 with new-onset functional impairment (e.g., bathing, dressing) and linked fee-for-service Medicare claims (n = 2521). Main Measures: Dementia was identified using HRS responses and non-dementia serious illness (e.g., advanced cancer, end-stage renal disease) was identified using Medicare claims. Paid care support was identified using HRS survey report of paid help with functional tasks. Key Results: While about 27% of the sample received paid care, those with both dementia and non-dementia serious illnesses in addition to functional impairment received the most paid care (41.7% received ≥ 40 h of paid care per week). In multivariable models, those with Medicaid were more likely to receive any paid care (p < 0.001), but those in the highest income quartile received more hours of paid care (p = 0.05) when paid care was present. Those with non-dementia serious illness were more likely to receive any paid care (p < 0.001), but those with dementia received more hours of care (p < 0.001) when paid care was present. Conclusions: Paid caregivers play a significant role in meeting the care needs of those with functional impairment and serious illness and high paid care hours are common among those with dementia in particular. Future work should explore how paid caregivers can collaborate with families and healthcare teams to improve the health and well-being of the seriously ill throughout the income spectrum. [ABSTRACT FROM AUTHOR]

This study examines the amount of excessive care work perceived among primary family caregivers of young children and aged family members in Korea and explores factors associated with the amount of their excessive care work. By using the 2018 Care Work and the Economy Project survey data collected from 1001 Korean primary family caregivers, this study estimates the amount of excessive care time of primary caregivers by calculating the difference in the actual and stated preferred amount of time for caregiving of children or aged family members and examines its determinants. Findings show primary child caregivers perform 20 h of excessive care per week while primary aged person caregivers perform 26.24 h of excessive care per week on average. Even if some excessive caregiving is redistributed from primary caregivers to their spouses, there remains an average of 14.36 h per week for childcare and 23.32 h per week for aged person care of excessive care time experienced by primary caregivers at the household level. Results of the generalized maximized entropy analyses show that for childcare, mothers who use longer hours of paid childcare service report a smaller amount of excessive care work. For aged person care, families with lower income, who live with the aged person, or with longer periods of caregiving report a larger amount of excessive care work at the household level. This study also highlights the role of attitudes towards gender roles, i.e., perceived fairness of care work within the household and the importance of government support for customized quality care services. [ABSTRACT FROM AUTHOR]

Background: Long-term care improves independence and quality of life of persons with dementia (PWD). The influence of socioeconomic status on access to long-term care was understudied. Objective: To explore the socioeconomic disparity in long-term care for PWD. Methods: This registry-based study included 14,786 PWD, registered in the Swedish registry for cognitive and dementia disorders (2014–2016). Education and income, two traditional socioeconomic indicators, were the main exposure. Outcomes were any kind of long-term care, specific types of long-term care (home care, institutional care), and the monthly average hours of home care. The association between outcomes and socioeconomic status was examined with zero-inflated negative binomial regression and binary logistic regression. Results: PWD with compulsory education had lower likelihood of receiving any kind of long-term care (OR 0.80, 95% CI 0.68–0.93), or home care (OR 0.83, 95% CI 0.70–0.97), compared to individuals with university degrees. Their monthly average hours of home care were 0.70 times (95% CI 0.59–0.82) lower than those of persons with university degrees. There was no significant association between education and the receipt of institutional care. Stratifying on persons with Alzheimer's disease showed significant association between lower education and any kind of long-term care, and between income and the hours of home care. Conclusions: Socioeconomic inequalities in long-term care existed in this study population. Lower-educated PWD were less likely to acquire general long-term care, home care and had lower hours of home care, compared to their higher-educated counterparts. Income was not significantly associated with the receipt of long-term care. [ABSTRACT FROM AUTHOR]

Background Teams assessing hospital noise against international guidelines regularly find that noise exceeds perceived safe levels in clinical settings. The care of sick people may be inherently noisy but recent efforts to tackle the problem propose a wider scope to identify sources and qualities of noise as well as more precision with noise recording. Aims We sought to challenge the scientific evidence cited in the four major documents pertaining to hospital noise in the UK to clarify if evidence of harm from noise included in guidelines is available, contemporary and of high quality. Methods Our team of hearing-health clinicians, acoustic scientists and acoustic engineers have conducted a narrative scoping review focused on critically appraising four of the most cited guidelines against which noise is measured in healthcare settings in the UK. Results There is a lack of high-quality evidence for commonly accepted consequences of noise cited in current guidelines. Conclusions The current evidence base for noise guidelines in a healthcare setting is largely based on subjective heterogeneous and inconclusive research. Whilst reduced noise is not disputed as potentially beneficial for patient care, further hypothesis-driven research and interventions assessing the benefits or outcomes of any such intervention should be sought to produce high-quality evidence of relevance on the clinical coalface. [ABSTRACT FROM AUTHOR]