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Background: The Integrated Palliative Care Outcome Scale (IPOS) validly and reliably measures symptoms and concerns of those receiving palliative care. Aim: To determine the equivalence of the paper version with an electronic version of the IPOS (eIPOS). Design: Multicentre randomised crossover trial (NCT03879668) with a within-subject comparison of the two modes (washout period 30 min). Setting/Participants: Convenience sample of specialist inpatient and palliative home care patients aged over 18 years with cancer and non-cancer conditions was recruited. Scores were compared using intraclass correlation coefficients (ICC), Bland-Altman plots and via a mixed-effects analysis of variance. Results: Fifty patients were randomised to complete paper-electronic (n = 24) and electronic-paper (n = 26) IPOS with median age 69 years (range 24–95), 56% male, 16% non-cancer. The ICCs showed very high concordance for the total score (ICC 0.99, 95% CI 0.98–1.00), lowest ICCs being observed for symptoms 'Appetite loss' and 'Drowsiness' (ICC 0.95, 95% CI 0.92–0.97). Nine of seventeen items had ICCs above 0.98, as did all subscales. No statistically significant mode, order, age, and interaction effects were observed for IPOS total score and subscales, except for 'Communication' (Fmode = 5.9, p = 0.019). Fifty-eight percent preferred the electronic version. In the group 75+ years, 53% preferred the paper version. Only three entries in the free-text main problems differed between the versions. Conclusion: The very high equivalence in scores and free text between the IPOS and the eIPOS demonstrates that eIPOS is feasible and reliable in an older palliative population. [ABSTRACT FROM AUTHOR]

Rapid automatized naming (RAN) is a powerful predictor of reading fluency, and many digitized dyslexia screeners include RAN as an essential component. However, the validity of digitized RAN has not been established. Using a sample of 174 second-graders, this study tested (1) the comparability between paper and digitized versions of RAN and (2) the validity of the digitized version. We found that paper and digital versions were highly correlated, and such correlation was consistent across students' reading levels. Further, the digital RAN predicted children's word reading proficiency as well as the paper version. Moreover, the constructs measured by paper and digital versions of RAN were comparable. We conclude that the digitized RAN is a valid alternative to the traditional paper version for this age group. [ABSTRACT FROM AUTHOR]

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

Using a standardized campus climate survey that was disseminated across three modes of administration (N = 5,137), this study assesses the nonresponse bias of two web-based versions to a self-administered paper-and-pencil version conducted at a Southeastern 4-year university. Significant differences emerged across all three modes of administration and victimization measures (bullying, sexual assault, rape, emotional abuse, and intimate partner violence [IPV]). Respondents were more likely to report victimization in the web-based surveys administered to online-only classes and via mass email compared to the paper survey. Policy implications, especially as it relates to survey administration, are discussed. [ABSTRACT FROM AUTHOR]

Objective: The PreventionLink of Southern Maryland is a 5-year project to eliminate barriers to participation and retention in the National Diabetes Prevention Program (DPP) lifestyle change program to prevent or delay the onset of type 2 diabetes in adults with prediabetes. This is the study to identify the obstacles to participation and retention in the DPP lifestyle change program among high burden populations and learn how CHWs have reduced the identified barriers to participation and retention for high burden populations. Methods: We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) to conduct this literature review. We have used the Scopus and PubMed, including all types of studies and peer-reviewed documents published in English between 2010 and 2020. Results: From 131 identified articles, 18 articles were selected for qualitative synthesis. The reviewed literature documented following as main barriers to participate in a DPP lifestyle change program: time, cost, lack of transportation, cost of transportation, commute distance, technology access, access to facilities and community programs, caregiver responsibilities, lack of health literacy and awareness, and language. CHWs can address these barriers to participation and retention, they were involved in educating and supporting roles; they worked as bridges between healthcare providers and participants and as intervention team members. Conclusions: Diabetes prevention program participants with social determinant risk factors who most need CHW services are unlikely to have financial resources to pay for CHW services out-of-pocket. Hence, the public and private health plans that pay for their prediabetes care should consider paying for these CHW services and there is a need to trust more to CHW and have them as a "community health teams" member. [ABSTRACT FROM AUTHOR]

Background: Shared responsibility is an essential part of family-centred care and it characterizes the relationship between parents and healthcare professionals. Despite this, little is known about their shared responsibility for decision-making in neonatal intensive care units. Aim: The aim of this scoping review was to identify previous studies on the subject and to summarize the knowledge that has been published so far. Method: The review was conducted using electronic searches in the CINAHL, PubMed, Scopus and PsycINFO databases and manual searches of the reference lists of the selected papers. The searches were limited to peer-reviewed papers that had been published in English from 2010 to September 2021. The data were selected based on inclusion and exclusion criteria and the findings were inductively summarized. We identified eight papers that met the inclusion criteria. Ethical considerations: The scoping review was conducted according to good scientific practice by respecting authorship and reporting the study processes accurately, honestly and transparently. Results: The results showed that shared responsibility for decision-making was based on the parents' intentions, but the degree to which they were willing to take responsibility varied. The facilitating and inhibiting factors for shared responsibility for decision-making were related to the communication between parents and professionals. The impact was related to the parents' emotions. Conclusion: It is essential that parents and professionals negotiate how both parties will contribute to their shared responsibility for decision-making. This will enable them to reach a mutual understanding of what is in the infants' best interests and to mitigate the emotional burden of decisions in neonatal intensive care units. More research is needed to clarify the concept of shared responsibility for decision-making in this intensive care context. [ABSTRACT FROM AUTHOR]

Background: Up to 40% of older women living in the community experience urinary incontinence. In community settings, urinary incontinence impacts the quality of life, morbidity, and mortality rates. However, little is known about urinary incontinence and its impact on older women admitted to hospitals. Objectives: This scoping review aims to establish the current knowledge of urinary incontinence during hospital admission for women (⩾ 55 years of age) with three key objectives: (a) What is the prevalence/incidence of urinary incontinence? (b) What health conditions are associated with urinary incontinence? (c) Is there an association between urinary incontinence and mortality? Eligibility criteria: Empirical studies were included in assessing the incidence/prevalence of urinary incontinence during hospital admissions and its related morbidities and mortality rates. Studies which only included men or younger women (< 55 years of age) were excluded. Only articles written in English and conducted between 2015 and 2021 were included. Sources of evidence: A search strategy was developed, and CINAHL, MEDLINE, and Cochrane databases were searched. Charting methods: Data from each article meeting the criteria were pulled into a table, including study design, study population, and setting, aims, methods, outcome measures, and significant findings. A second researcher then reviewed the populated data extraction table. Results: Overall, 383 papers were found: 7 met inclusion/exclusion criteria. Prevalence rates ranged from 22% to 80% depending on the study cohort. Several conditions were associated with urinary incontinence, including frailty, orthopaedics, stroke, palliative care, neurology, and cardiology. There was a potential positive association between mortality and urinary incontinence, although only two papers reviewed reported mortality. Conclusion: A dearth of literature determined the prevalence, incidence, and mortality rates for older women admitted to hospitals. Limited consensus on associated conditions was found. Further research is needed to fully explore urinary incontinence in older women during hospital admissions, particularly concerning prevalence/incidence and its association with mortality. [ABSTRACT FROM AUTHOR]

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

Background: Festivals play an important role in improving death and grief literacy, enabling members of the public to engage with these often-sensitive topics. Good Grief Weston festival was co-designed and delivered with the community in Weston-super-Mare, a coastal town in South-West England with high levels of socioeconomic disadvantage but rich community assets. It was held in person over 8 days in May 2023. Objectives: To evaluate the reach and impact of Good Grief Weston festival and gather data to inform future festivals. Design: Mixed methods evaluation (survey and focus groups). Methods: Online and paper surveys assessing participants' characteristics and experiences were administrated during and after the festival. Survey participants who indicated their willingness to participate were invited to attend a focus group. Focus groups were recorded, transcribed and analysed using thematic analysis. Data were collected by trained community co-researchers. Results: Approximately 3000 people attended the festival. Of 204 completed surveys, 64.5% were from women, age range ⩽15 to ⩾75 years; 88.2% identified as White; 14.9% deaf, disabled/with a chronic condition; 18.9% neurodivergent; 9.0% gay, bisexual or queer. Festival participants were entertained (70.9%), inspired (68.5%), felt part of a like-minded community (54.3%), talked to someone new (49.2%), learnt about grief/bereavement (34.3%), shared or expressed experiences (30.3%) and found out about local support (19.7%). 71.3% reported that they felt more confident talking about grief after attending. Median experience rating was 5 (IQR 0; possible range 1 = poor to 5 = excellent). In free-text comments, participants expressed appreciation for the festival and described benefits in attending. Two focus groups were conducted (n = 8 participants, all women), lasting c.1.5 h. Focus groups added rich descriptions of the festival's value, and data to inform the next festival. Conclusion: Findings suggest festivals of this nature can play a central role in a public health approach. Plain language summary: What was the impact of Good Grief Weston festival? Why was the study done? Previous studies have shown that many people feel unsupported by their community after the death of a loved one. We designed a festival to improve knowledge and support for bereaved people. We did this study to assess how the festival affected the people who attended. What did the researchers do? The team included researchers and people and organisations from the local community. Together, we designed and ran a festival on the topic of death, grief and bereavement in Weston-super-Mare, a coastal town with areas of high deprivation. The festival took place over an eight-day period in May 2023 and included creative, interactive and educational events. The team collected feedback on attendees' experiences of the festival. We did this using online and paper feedback forms, postcards, and focus groups to collect as many opinions as possible. What did the researchers find? We found that a wide range of people attended the festival. Most people who took part in the research rated the festival as 'excellent'. They told us they learnt about grief and bereavement and found out about local support services. Attendees met new people, shared their experiences, and felt that the festival built community spirit. They also made suggestions to improve any future festivals. What do the findings mean? The findings show that in-person festivals can effectively engage the public on the topic of death, grief and bereavement. They can also help develop connections between people and organisations in communities. These connections and learning opportunities may help communities to support their members through bereavement. [ABSTRACT FROM AUTHOR]

The grandparents' retirement behavior has important support on mother's employment quality. This paper aims to estimate the influence of grandparents' retirement behavior on mother's employment quality, based on the China Family Panel Studies of 2018. The findings reveal a significant enhancement in mother's employment quality resulting from grandparents' retirement behavior. The mediating effect of grandparents' intergenerational caregiving explains approximately 68.77% of this improvement. Furthermore, the positive effect of grandparents' retirement behavior on mother's employment quality is more pronounced in families where the grandchild is older and in better health. Notably, the involvement of paternal grandparents yields more favorable outcomes compared to maternal grandparents. Findings from this study suggest that grandparent's retirement behavior play an important role in mother's employment quality through the provision of childcare assistance. Moreover, these findings highlight that the effectiveness of such support varies depending on the characteristics of both grandchildren and grandparents. [ABSTRACT FROM AUTHOR]

Articulating the complexities of relational wellbeing can be challenging at the best of times, and even more complex during periods of heightened stress and uncertainty. Taking inspiration from feminist materialisms and recent writings on material methods, we explore the potential of object interviews to reveal the material-discursive dimensions of women's experiences of wellbeing during the pandemic. In this paper we describe our research process conducting object interviews with 38 women living in Aotearoa New Zealand from a range of socio-economic, cultural, and ethnic backgrounds. We explore the potential and challenges of object interviews for surfacing new ways of knowing (theoretically, methodologically, and cross-culturally) wellbeing beyond human-oriented health, medical and social-constructionist models, and towards more multidimensional and relational understandings. This paper offers our reflections and learnings about the process of re-turning object interviews and the potential of such approaches for evoking complex ways of knowing wellbeing during and beyond pandemic times. [ABSTRACT FROM AUTHOR]

This paper reports follow-up findings for an Mentalization based treatment (MBT) parenting intervention delivered to a community mental health sample. Parents completed the 12-week version of the Lighthouse Parenting Program (LPP) and were evaluated on parenting practices, parent-child relationships, parental mental health indicators, and child problem behaviour levels. We evaluated the extent to which improvements in mentalizing at follow-up mediated changes in parenting, parental adjustment, mental health, and child outcomes. Results included a reduction in parental coercive behaviours and child problems, improved parent-child relationship, and better parental psychological adjustment and mental health. Improvement in self-focused mentalizing were observed. Self-focused mentalizing mediated the changes in most outcomes from baseline to 3-month follow-up. These results provide strong preliminary evidence that the LPP improves parent and child outcomes. [ABSTRACT FROM AUTHOR]

Since the outbreak of the COVID-19 pandemic, the gender dimension of its more visible socio-economic impacts has been the topic of study by several researchers. The current paper takes this further by focusing on the invisible chores done in the families at home. This paper studies how people's behavior towards housework changed during and after the confinement period in Spain. We analyze whether people did more housework during the lockdown period than before it, the way this housework was distributed between women and men, and whether this has changed since the end of lockdown. The empirical analyses point to a new trend in the housework gender gap: differences between men and women have narrowed since the lockdown, although women continue to bear most of the responsibility. [ABSTRACT FROM AUTHOR]

Traditional imaging modalities used to assess velopharyngeal insufficiency (VPI) do not allow for direct visualization of underlying velopharyngeal (VP) structures and musculature which could impact surgical planning. This limitation can be overcome via structural magnetic resonance imaging (MRI), the only current imaging tool that provides direct visualization of salient VP structures. MRI has been used extensively in research; however, it has had limited clinical use. Factors that restrict clinical use of VP MRI include limited access to optimized VP MRI protocols and uncertainty regarding how to interpret VP MRI findings. The purpose of this paper is to outline a framework for establishing a novel VP MRI scan protocol and to detail the process of interpreting scans of the velopharynx at rest and during speech tasks. Additionally, this paper includes common scan parameters needed to allow for visualization of velopharynx and techniques for the elicitation of speech during scans. [ABSTRACT FROM AUTHOR]

As previous research has observed, medical students and physicians alike confront vast amounts of knowledge in their education and practice, such that no one clinician can know everything there is to know about biomedicine. Even before clerkships, medical students learn to cope with this impossibility by prioritizing certain information based on its perceived utility for exams and clinical practice. Many factors can shape this process, including teamwork, wherein individual medical students rely on one another to address gaps in knowledge at the level of the group. This paper will draw on qualitative data from two allopathic medical schools in the American Midwest to demonstrate that peer-to-peer learning, a widely utilized pedagogical modality in North American medical schools, is amongst the earliest places where future physicians learn how to rely on their peers in the profession as they make choices about what to know and what not to know about biomedicine: cultivating a culture of "intraprofessionalism" between students with different knowledges and values, as they prepare to enter the same profession. The paper will also consider how differences in the student populations at two field sites impact intraprofessional development. Drawing on scholarship of peer-based learning strategies and the sociology and anthropology of medical education, the authors argue that peer-to-peer learning is a key site in the professional socialization of medical students toward the effective management of medical knowledge. [ABSTRACT FROM AUTHOR]

This article explores how solicited paper diaries, and the accompanying materials, are carefully handled over the course of one research project. It foregrounds the value of attending to mundane moments with research materials, by tracing tangible material encounters together with intimate fieldnote reflections. Through drawing upon theories of materiality with feminist and relational ethics of care, this article centralises paper diaries as a key mediator of relationships and care within research. It considers the micro processes of choosing diaries, posting them, receiving and storing them and tracing the emotionally charged moments as a researcher in everyday research situations. Such reflections, from the perspective of the researcher, look to offer insights into research relationalities and care. It argues that these momentary fieldwork reflections extend understandings of material methodologies by emphasising relational intimacies as a researcher and connects material and sensory understandings with feminist ethics of care and researcher reciprocities. [ABSTRACT FROM AUTHOR]

Novelty and impact are key characteristics of the scientific enterprise. Classic theories of scientific change distinguish among different types of novelty and emphasize how a new idea interacts with previous work and influences future flows of knowledge. However, even recently developed measures of novelty remain unidimensional, and continued reliance on citation counts captures only the amount, but not the nature, of scientific impact. To better align theoretical and empirical work, we attend to different types of novelty (new results, new theories, and new methods) and whether a scientific offering has a consolidating form of influence (bringing renewed attention to foundational ideas) or a disruptive one (prompting subsequent scholars to overlook them). By integrating data from the Web of Science (to measure the nature of influence) with essays written by authors of Citation Classics (to measure novelty type), and by joining computational text analysis with statistical analyses, we demonstrate clear and robust patterns between type of novelty and the nature of scientific influence. As expected, new methods tend to be more disruptive, whereas new theories tend to be less disruptive. Surprisingly, new results do not have a robust effect on the nature of scientific influence. [ABSTRACT FROM AUTHOR]

Background: Reports of increasing presentations of new cases of acute psychosis both locally, nationally and internationally during the COVID-19 pandemic, warranted further investigation. International case reports almost exclusively reported only clinical outcome (e.g. remission of psychotic symptoms), and fail to report on social precipitants or social outcomes. This is a common omission when investigating new psychosis cases such as acute and transient psychotic disorder (ATPD). In order to assess social impacts and outcomes, we conducted a rapid review of recent evidence. Aims: To conduct a rapid review of the recent evidence of social outcomes on new cases of psychosis emerging during the COVID-19 pandemic. Method: Four databases (Medline, Embase, Psychinfo and Cochrane COVID-19) were searched for ATPD, psychosis and social outcomes in adults aged 18+. Duplicates were removed. There were no language limitations. Results: There were 24 papers consisting of 18 original data research papers and 6 reviews. Additionally, 33 papers/letters, reporting on 60 individual cases of psychosis emerging during the COVID-19 pandemic. These two sets of papers were reviewed separately. Many original data research papers and reviews were sub optimal in their quality, with 44% online surveys, with the remainder being routinely collected data. Conclusion: There is a consensus that clinical outcomes of ATPD and other brief psychotic disorders (BPD) are good in the short term. The focus only on symptomatic clinical presentation and outcomes, leaves a gap in our understanding regarding social stressors and longer term social outcomes. ATPD and BPD often may not come to the attention of Early Intervention in Psychosis services, and if they do, are discharged following symptomatic remission. Without an understanding of the social stress factors and social outcomes, opportunities may be missed to prevent increased social disability and future relapse with these presentations. [ABSTRACT FROM AUTHOR]

Within qualitative research, much can be learned from the influence of researcher positionality on the research process. Reflecting upon ethnographic fieldwork undertaken for a doctoral study, this paper explores how researcher positionality not only shapes research motivations but also situates the researcher and the 'researched', impacting how data is created and interpreted. There is a long history of engaging with positionality in qualitative research, however, oftentimes this engagement is purely descriptive, providing a 'shopping list' of characteristics and stating if these are shared or not with participants. It is important for engagement with reflexivity to go beyond providing a 'shopping list' of positionality statements to develop deeper discussions about the fluidity of positionality across the research process. Using the previously established concept of 'kitchen table reflexivity', I reflect on how talk allows researchers to outline shifts and adaptability in positionality as research progresses. I expand this concept to argue that kitchen table reflexivity can occur in conversations during fieldwork with participants, utilising a range of in/visible tools at the researcher's disposal. For example, the spaces between fieldwork encounters, the 'waiting field', is often where observations and informal discussions with participants take place. Using fieldnotes and interview data, this paper outlines how positionality fluctuates and interweaves with the theoretical, methodological, and analytical approach taken. The paper concludes by restating the importance of meaningful engagement with positionality throughout qualitative research, in order to avoid static and hollow positionality statements. [ABSTRACT FROM AUTHOR]

This paper argues that trust cannot be taken for granted in long-term participatory research and promotes greater consideration to conceptualizing the trusting process as fluid and fragile. This awareness by researchers can reveal to them how the passing of time shapes and reshapes the nature of trusting relationships and their constant negotiation and re-negotiation. The paper draws together literature from different disciplines on the themes of trust, temporality and participatory research and outcomes from interviews and workshops undertaken for The Trust Map project to focus on two key moments that reveal the fragility of trust. These are the subtlety of disruption and trust on trial and trust at a distance. We discuss how trust was built over time through processes of interaction that were continually tested, incremental and participatory. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations. Aim: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care. Design: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis. Data sources: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches. Results: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems. Conclusion: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care. [ABSTRACT FROM AUTHOR]

The purpose of this study is to provide an overview of patients' experiences using a precision medicine (PM) clinic that conducts pharmacogenomics-based (PGx) testing for adverse drug reactions. The study aimed to identify the features of the clinic valued most by patients and areas for improvement. A paper survey was used to collect data. Survey questions focused on patients' perceptions of the PM testing and the overall clinic experience. Sixty-seven patients completed the survey. Quantitative data were analyzed using SPSS and frequencies were reported. Open-ended responses were coded and organized thematically. Patients reported that the clinic services increased confidence in their medication usage. Feeling respected by staff, receiving education, and quick appointments were highly valued by patients. Suggested areas for improvement included better communication from the clinic to patients, expansion of clinic services, and education for other healthcare providers. The findings demonstrate that patient experience goes beyond the clinical care provided. Current and potential future providers of PM should invest the time and energy to configure their care delivery system to enhance the patient experience. [ABSTRACT FROM AUTHOR]

Listening effort (LE) describes the cognitive resources needed to process an auditory message. Our understanding of this notion remains in its infancy, hindering our ability to appreciate how it impacts individuals with hearing impairment effectively. Despite the myriad of proposed measurement tools, a validated method remains elusive. This is complicated by the seeming lack of association between tools demonstrated via correlational analyses. This review aims to systematically review the literature relating to the correlational analyses between different measures of LE. Five databases were used-PubMed, Cochrane, EMBASE, PsychINFO, and CINAHL. The quality of the evidence was assessed using the GRADE criteria and risk of bias with ROBINS-I/GRADE tools. Each statistically significant analysis was classified using an approved system for medical correlations. The final analyses included 48 papers, equating to 274 correlational analyses, of which 99 reached statistical significance (36.1%). Within these results, the most prevalent classifications were poor or fair. Moreover, when moderate or very strong correlations were observed, they tended to be dependent on experimental conditions. The quality of evidence was graded as very low. These results show that measures of LE are poorly correlated and supports the multi-dimensional concept of LE. The lack of association may be explained by considering where each measure operates along the effort perception pathway. Moreover, the fragility of significant correlations to specific conditions further diminishes the hope of finding an all-encompassing tool. Therefore, it may be prudent to focus on capturing the consequences of LE rather than the notion itself. [ABSTRACT FROM AUTHOR]

Population mobility makes patient-tracking and care linkage in the South African Development Community (SADC) challenging. Case-based surveillance (CBS) through individual-level clinical data linked with a unique patient-identifier (UPI) is recommended. We conducted a mixed-methods landscape analysis of UPI and CBS implementation within selected SADC countries, this included: (1) SADC UPI implementation literature review; (2) assessment of UPI and CBS implementation for high HIV-prevalence SADC countries; (3) UPI implementation case-study in selected South African primary healthcare (PHC) facilities. Research into CBS and UPI implementation for the SADC region is lacking. Existing patient-identification methods often fail and limit patient-tracking. Paper-based records and poor integration between health-information systems further restrict patient-tracking. Most countries were in the early-middle stages of CBS and faced UPI challenges. Our South African case-study found that the UPI often goes uncaptured. Difficulties tracking patients across prevention and care cascades will continue until a functional and reliable UPI is available. [ABSTRACT FROM AUTHOR]

Mitigating the impacts of Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (HIV/AIDS) and substance use requires comprehensive and systematic thinking in designing interventions and developing policies. This study describes the growth of research publications from 1991 to 2021 in the Web of Science database and points out current research landscapes in the fields of HIV/AIDS and substance use. Latent Dirichlet Allocation was used for classifying 21 359 papers into corresponding topics. The most common topics were HIV transmission, HIV infection, quality of life and mental health of substance users, and the biomedical effect of substance use. Emerging research landscapes include vulnerabilities of people who inject drugs to HIV transmission and related health problems. This study found a lack of research on health services, interdisciplinary and inter-sectoral in combination with clinical evaluation and treatment services. Future investment and implementation of HIV/AIDS and substance use programs should focus on research of health services and clinical evaluation, especially context-specific interventions. [ABSTRACT FROM AUTHOR]

This paper follows an earlier report of young children's object play activities investigated in a cross-sectional sample of 289 typically developing children. Thirty-minute videotaped observations were taken of children at 8, 12, 18, 24, 30, 36, 42, 48, 54, and 60 months of age in their homes. Forty-nine percent were boys. Children were identified as White (70%); mixed racial/cultural backgrounds (14%); Asian (7%); Black (6%); and Latinx (3%). This study reports patterns of cognitive development based on mastery scores derived from frequency and variety of activities in the 27 categories identified in the earlier study. Mastery scores afforded evaluation of the robustness of certain play categories, and the retention and reduction of others, yielding a final set of 14 to describe and assess developments in play. Discussion centers on the value of differentiated categories along with scores that yield a standard for an assessment of children's play. [ABSTRACT FROM AUTHOR]

In Bauchi State, northern Nigeria, communities recognise short birth interval (kunika in the Hausa language) as harmful, but family planning is a sensitive topic. This paper describes the development of a culturally safe way to communicate about kunika in a conservative Muslim setting. The objective was to co-design culturally safe communication material, based on local knowledge about short birth interval, to share with women and men in households. Six community co-design groups of women and six of men (total 96 participants) reviewed summaries of their previously created maps of perceived local causes of kunika, categorised as frequent sex, family dynamics and non-use of contraception. They advised how these causes could be discussed effectively and acceptably with women and their husbands in households and suggested storylines for three short video docudramas about the prevention of kunika. The research team created the docudramas with a local producer and fieldworkers piloted their use in households. The design groups advised that communication materials should focus on child spacing rather than on limitation of family size. Even sensitive issues could be covered. People would not change their sexual behaviour but could be advised to use contraceptives to prevent kunika. The groups approved the final videos and six focus groups of visited women and men reported they were acceptable and helpful. Community co-design of communication about kunika was feasible and led to videos about a sensitive topic that were acceptable to ordinary men and women in communities in Bauchi. [ABSTRACT FROM AUTHOR]

Research has long-documented how Canada's temporary foreign worker programs (TFWP) foster workers' precarity through their status as non-citizens and living and working conditions, ultimately, impacting their health. While studies point to limited supports and services for workers, their role in reinforcing or alleviating the precarious conditions that migrant agricultural workers experience remains largely unexplored. This paper draws on interviews with 35 service providers in three migrant-intensive regions in southwestern Ontario, to explore how service providers describe and construct support. We explore the barriers workers face in accessing services, challenges providers experience in supporting workers, and strategies employed to surmount these barriers. We argue that this multiregional analysis is important to illuminate how support shapes and is shaped by the larger structural context, namely common features of Canada's TFWP. A more comprehensive understanding of support moreover, provides direction for sustainable interventions that can promote the health and wellbeing of this population. [ABSTRACT FROM AUTHOR]

Drawing data from a study on LGBT parent families that combined in-depth interviews with members of 19 families and a national online survey of 595 families, this paper focuses on the role of grandparents in providing childcare within these families. Similar to their heterosexual counterparts, grandparents are heavily involved in childcare in these lesbian and gay parent families. The participation of the families of origin in childcare not only greatly alleviates the family pressure experienced by our participants due to their alternative sexuality, but also contributes to the normalization of these queer families in the face of public scrutiny. Despite the alternative construction of kinship in queer families, the conventional notion of blood ties still influences grandparents' involvement in childcare. We contend that grandparenting in LGBT parent families exemplifies the complex yet innovative improvisation of intergenerationality in contemporary China, reflecting the ongoing negotiation between family responsibility and individual autonomy. [ABSTRACT FROM AUTHOR]

Self-tracking in general, and by women in particular is increasingly researched. In the literature, however, women's interactions with selftracking technologies in menopause—a change that (almost) every woman will go through—is largely taken for granted. This paper addresses this lacuna by asking whether and how menopausal women use self-tracking technologies, and how this (non-) usage mediates their self-experiences. In doing so, it elaborates on another understudied phenomenon: the constitutive significance of "un-tracking"—that is, of various shades and levels of not using self-tracking technologies—in menopause. Most of the 13 interviewed women in this study reported that they stopped, drastically reduced, or resisted self-tracking in menopause. By framing the discussion of these accounts of "un-tracking" within the tradition of post-phenomenology and a phenomenology of situated bodily self-awareness, we show that these women experience their bodies as (1) wise and eu-appearing, (2) unmoldable and dysappearing, and (3) longing for disappearance. Herein, their experientially mediating un-tracking practices are temporally and socio-culturally contextualized in complex ways and bear substantial existential significance. This study establishes the potential harmful ways in which self-tracking mediates self-experiences, as well as the fruitful ways in which un-tracking may do so. Against the background of this observation, this paper makes an appeal to take a step back from uncritically celebrating self-tracking in healthcare contexts, and critically evaluates whether (the promotion of) using (more) self-tracking technologies in these contexts is desirable to begin with. [ABSTRACT FROM AUTHOR]

This paper outlines a new approach to using participants' self-identified temporal triggers to center data collection around meaningful time periods as it pertains to coping with loss and trauma. We describe the utility of ecological momentary assessment and wearable technology as tools for time-informed data collection; and provide a study protocol for a recent study in which we paired these approaches to gather data from adult respondents who had lost a loved one. Data collection included two phases: a baseline phase and a target date phase. The target date phase was centered around the participant's self-identified temporal trigger. Several lmitations to this mode of data collection are disucsed. The overall approach is client centered and more accurately captures the lived experiences of individuals coping with loss and trauma. Data of this kind will begin to highlight the psychological and physiological impacts of anniversary dates among survivors of trauma and loss. [ABSTRACT FROM AUTHOR]

Prospective memory helps us to remember to perform tasks in the future. Prospective memory can be either time or event based. The goal of this study was to determine time- and event-based prospective memory in autistic adults across the life span. Autistic (n = 82) and non-autistic (n = 111) adults, aged between 30 and 86 years, performed the lab-based Amsterdam Breakfast Task, and several naturalistic prospective memory tasks. Preregistered analyses (AsPredicted #34249) were performed using classical frequentist as well as Bayesian statistics. On none of the prospective memory tasks, group differences were observed. Our results show no effect of age on naturalistic tasks, but age did affect our lab-based measure, indicative of the age paradox often described in non-autistic adults. Moreover, we found evidence for a parallel age-related effect of lab-based and naturalistic prospective memory in autistic and non-autistic individuals. What is already known : Prospective memory is an important function for daily living. It is the cognitive function that helps you remember that you are meeting your friend for coffee at 2 pm tomorrow, or that you need to take your vitamins after breakfast. This cognitive function is particularly important in autistic adults, but how prospective memory is associated with increasing age, we currently do not know. What this paper adds : Although performance on experimental tasks that measure prospective memory decreases with age, this pattern is similar in autistic and non-autistic adults. No age effects were found for tasks that were performed outside the lab. Autistic adults and non-autistic adults perform similarly on prospective memory, and this performance remains similar when autistic and non-autistic adults age. Implications for practice, research, or policy : While our results show that prospective memory decreased with increasing age, our results do point to parallel development of prospective memory in autistic and non-autistic adults. This finding serves as a reassurance for those individuals concerned that older autistic individuals might show quicker cognitive decline. [ABSTRACT FROM AUTHOR]

Background: Compassionate communities have been put forward as a promising model for community-based support for people facing serious illness, caregiving, dying, and loss. In particular, educational institutions are increasingly acknowledged as potential settings to function as compassionate schools and compassionate workplaces, cultivating acceptance and validation of these experiences beyond the university setting. Objectives: This paper investigates the activities and outcomes of a compassionate community initiative—the Compassionate University program at the Vrije Universiteit Brussel in Belgium. Design: Ripple Effects Mapping was used to guide the focus group and individual interviews conducted with core team members responsible for the development and implementation of the Compassionate University program. Methods: During the focus group and individual interviews, the core team members reflected on the program contributions, with their narratives visually depicted via a hand-drawn mind map. Qualitative data derived from this mind map were entered into XMIND mapping software and fine-tuned based on the focus group and individual interview transcripts and additional project records. Results: Thematic analysis identified four outcome areas that encapsulate the key contributions of the Compassionate University program: (i) increased acceptance and integration of topics such as serious illness, death, and bereavement into existing practices; (ii) broader support for and formalization of compassionate procedures and policies; (iii) emergence of informal networks and internal collaboration on the topics; and (iv) diffusion of compassionate ideas beyond the university. Conclusion: The Compassionate University program facilitates a cultural shift within the university environment, fostering greater acceptance of integrating topics such as serious illness, death, and bereavement into existing practices. Additionally, compassionate procedures and policies for students and staff have been formalized, and core team members are increasingly called upon to provide support on these matters. Notably, Compassionate University stands out as one of the pioneering initiatives in Europe, attracting different educational institutions seeking guidance on cultivating a more compassionate environment. [ABSTRACT FROM AUTHOR]

Background: Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers. Method: We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews. Results: Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted. Conclusion: Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones. Plain language summary: Understanding how loved ones feel about someone close to them donating their brain to research after their death from brain cancer The act of donating brain tissue after death from brain cancer is a huge gift to medical research and may have an impact on the ability of the scientific community to improve outcomes for people diagnosed with brain cancers. While we understand how valuable these donations are for research, we need more work to understand how these donations impact the people who donate and those who love and support them. This paper explores the experiences of people who have lost someone to brain cancer who then went on to donate their brain tissue after their death. Through the use of interviews, it explores the impact that the donation has on a loved one or next of kin from providing a source of comfort, empowerment, pride or an alternative to 'senseless' suffering and tragedy. It also provides areas that should be considered by people who are facilitating brain donations to ensure that any potential, harm or upset can be minimized. [ABSTRACT FROM AUTHOR]

Unequal divisions of paid work and care among new parents contribute to increasing inequalities. One explanation for this is joint utility maximization and the benefits of partners (temporarily) specializing in paid work and care. This paper examines the (dis)advantages of specializing compared to dividing tasks more equally by studying whether differences in specialization between same-sex and different-sex couples lead to differences in household earnings after entering parenthood. Using register data from Norway, Finland, Denmark, and Sweden and examining first-time parents, we show that female couples have a more equal within-couple income development during the transition to parenthood than different-sex couples do. However, we find no differences in household income (including or excluding social transfers) between the two types of couples. Although a more equal task division may be preferred from an individual perspective, our results show no evidence of a "best strategy" when it comes to maximizing household income. [ABSTRACT FROM AUTHOR]

Community-based participatory action research can facilitate counseling psychologists' engagement in social justice to benefit Black people's mental health. One way to improve Black mental health is to equip credible and trustworthy community members with mental health knowledge and skills to support other community members experiencing mental health challenges. This study presents the Neighborhood Healers Project—a community-based participatory action research project that trains Black adults (Neighborhood Healers Fellows) in Mental Health First Aid (MHFA). During the inaugural 12-month fellowship year, we collected longitudinal qualitative data from N = 20 Fellows on the relevance of MHFA to Black people. In this paper, we examined their responses using reflexive thematic analysis. Findings included two themes with affiliated subthemes: (a) Liberatory Paradigm Shift and (b) For Us By Us: Culturally Relevant Curriculum. We conclude with implications for counseling psychologists. [ABSTRACT FROM AUTHOR]

Extra care housing (ECH) is a type of housing with care and support designed to enable older people to age in place. Approximately one fifth of residents living in ECH are living with dementia and yet, there remains gaps as to how best to support people to live well with dementia in the context. ECH stock across the United Kingdom (UK) includes a diverse range of options that can be grouped into integrated, specialist and separated accommodation. Integrated models involve residents with dementia living alongside residents without dementia. Specialist ECH offer accommodation exclusively for people living with dementia. Separated models offer a separate area for residents with dementia within a larger, integrated site. How these different models work for residents living with dementia is little known and has remained a significant gap in knowledge that impairs both professionals and people living with dementia when choosing housing and care. This paper reports on findings from a large study of residents living with dementia in ECH. The focus is on the potential benefits and challenges of different models of provision. Data were generated from interviews with 100 participants (residents, family members, staff, and adult social care professionals) at eight case study sites across England. Findings demonstrated that there are potential benefits and challenges within each model, but the limited diversity of stock limits choice. Multiple variables beyond the model of provision affect the lived experience, meaning that there is no universal model of optimal support. Rather, the approach and resources of each site is more important than the model of provision. Suggestions for future research directions are considered. [ABSTRACT FROM AUTHOR]

In the typically developing population, social touch experiences are influenced by several factors, including the biological sex of toucher and receiver, the body area wherein the touch is delivered and the social context in which the tactile exchange occurs. However, it is currently unexplored how social touch experiences of autistic adults are modulated by these factors. We sought to address this by utilizing a self-report body-painting task. Our main results show that autistic, compared with non-autistic, adults reported lower levels of pleasantness, erogeneity and appropriateness, specifically in intimate and friendly social contexts and in body areas typically touched in these situations. Importantly, sex played a major role in group differences. For instance, although autistic females reported, across social contexts, less pleasantness than both non-autistic females and autistic males, they experienced similar levels of appropriateness in the professional social context, usually deemed as touch-appropriate. Our findings provide new support to the hypothesis that social touch is experienced and possibly conceptualized differently by autistic compared with non-autistic adults. Moreover, by identifying the factors that influence social touch processing in autistic adults, our results might aid the development of support for autistic individuals seeking help in the spheres of social and intimate touch. What is already known about the topic? At least in neurotypical individuals, social touch represents an important channel for emotional communication associated with social bonding and pain/anxiety modulation. Autistic adults report to avoid social touch more and to have different tactile sensitivity than their non-autistic comparisons. What this paper adds? Few studies specifically investigated social touch in autistic individuals, and none of them examined the role of participants' sex, social context in which social touch occurs, and specific body areas being touched. In our study, adult participants reported how pleasant, erogenous and appropriate they would consider touches delivered by another person over their entire body in intimate (date), friendly (dance class) and professional (physiotherapy-massage session) social contexts. Autistic adults reported social touch to be less pleasant, erogenous and appropriate specifically in intimate and friendly social contexts and in body areas typically touched in these situations. Importantly, autistic females seem more at risk to experience unpleasant social touch as, although they considered it more unpleasant than non-autistic females and autistic males, they did consider it similarly appropriate in professional social contexts where touch is normed to be socially appropriate. Implications for practice, research or policy Our results might improve awareness and understanding about autistic adults' different, and often more discomforting, experience of social touch and thus help consider and respect it during everyday social interactions. Our results might also benefit future research investigating, for instance, the neural underpinnings of social touch differences in autism or aiming at developing support for autistic individuals seeking help in the diverse spheres of social touch. [ABSTRACT FROM AUTHOR]

Mitigating the impacts of Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (HIV/AIDS) and substance use requires comprehensive and systematic thinking in designing interventions and developing policies. This study describes the growth of research publications from 1991 to 2021 in the Web of Science database and points out current research landscapes in the fields of HIV/AIDS and substance use. Latent Dirichlet Allocation was used for classifying 21 359 papers into corresponding topics. The most common topics were HIV transmission, HIV infection, quality of life and mental health of substance users, and the biomedical effect of substance use. Emerging research landscapes include vulnerabilities of people who inject drugs to HIV transmission and related health problems. This study found a lack of research on health services, interdisciplinary and inter-sectoral in combination with clinical evaluation and treatment services. Future investment and implementation of HIV/AIDS and substance use programs should focus on research of health services and clinical evaluation, especially context-specific interventions. [ABSTRACT FROM AUTHOR]

People with dementia from culturally and linguistically diverse backgrounds often face poor health and social outcomes such as stigma, depression, and reduced help seeking behaviours. Dementia friendly communities have been shown to reduce stigma, and the gap in health and social outcomes for people impacted by dementia. Despite the large presence of established dementia friendly communities, their functioning in multicultural communities remains underexplored. The aim of this review was to identify the barriers and facilitators of cultural inclusivity to inform the development of a multicultural dementia friendly community. We systematically searched for academic and grey literature regarding existing and prospective age or dementia-friendly communities that engaged with culturally and linguistically diverse communities. Using the matrix method, data on the barriers and facilitators to engagement were extracted. Papers were analysed for common themes and findings were integrated in a narrative format. A total of 3,164 papers were identified, 11 of which met inclusion criteria. There were 6 dementia friendly communities in North America, 3 in Europe, 1 in Australia and 1 in Asia. Analyses revealed that barriers to cultural inclusivity were centered around the accessibility of services, sociocultural factors, and the environment, including issues such as low awareness of dementia and stigma, language barriers, isolation, and the inaccessibility of transport and buildings. Leveraging existing cultural leaders and social structures to target culturally and linguistically diverse populations and develop tailored dementia friendly initiatives were key facilitators. To foster cultural inclusivity in dementia friendly communities, a culturally specific lens that addresses these barriers and utilises facilitators must be applied from the design stage through to implementation and evaluation. [ABSTRACT FROM AUTHOR]

Background: Population ageing in low and middle-income Asian countries is associated with increased prevalence of dementia. The proportion of people with dementia in countries such as Bangladesh and Thailand are increasing. People with dementia can have complex care and health service needs. If these needs are not adequately met, this can result in a decreased quality of life and burden on the health system. There is considerable research into the needs of people with dementia in high-income countries. However, research on the needs of people living with dementia in low and middle-income countries remains underexplored. The aim of this study was to review and summarise the literature on the health and social care needs of older people with dementia in low and middle-income Asian countries. Methods: Five online databases (PubMed, Scopus, Web of Science, CINAHL and PsycINFO) and google scholar were searched. The databases were searched using a selection of key words. PRISMA-ScR approach was followed in reporting the process. Key findings: We extracted eight studies related to the health and social care needs of people with dementia that met our inclusion criteria. From the available literature, needs were categorised across five categories: (i) social, cognitive, and mental health needs; (ii) physical needs; (iii) care and service needs; (iv) knowledge-related needs; and (v) spiritual care needs. Conclusion: While eight papers were located which discussed the needs of people with dementia across a range of domains, this review demonstrates a deficit in the current evidence-base about the health and social care needs of people living with dementia in low and middle-income Asian countries. Further research is needed to identify health and care needs of people with dementia and how these needs are being met. [ABSTRACT FROM AUTHOR]

Background and Objectives: People living with dementia have historically been excluded from qualitative research and their voices ignored due to the perception that a person with dementia is not able to express their opinions, preferences and feelings. Research institutions and organizations have contributed by adopting a paternalistic posture of overprotection. Furthermore, traditional research methods have proven to be exclusionary towards this group. The objective of this paper is to address the issue of inclusion of people with dementia in research and provide an evidence-based framework for dementia researchers based on the five principles of human rights: Participation, Accountability, Non-discrimination and equality, Empowerment and Legality (PANEL). Design: This paper adapts the PANEL principles to the research context, and uses evidence from the literature to create a framework for qualitative research in people with dementia. This new framework aims to guide dementia researchers in designing studies around the needs of people with dementia, to improve involvement and participation, facilitate research development and maximize research outcomes. Results: A checklist is presented with questions related to the five PANEL principles. These questions cover ethical, methodological and legal issues that researchers may need to consider while developing qualitative research for people with dementia. Conclusions: The proposed checklist offers a series of questions and considerations to facilitate the development of qualitative research in patients with dementia. It is inspired by current human rights work of recognized dementia researchers and organizations who have been directly involved in policy development. Future studies need to explore its utility in improving participation, facilitating ethics approvals and ensuring that outcomes are relevant to people with dementia. [ABSTRACT FROM AUTHOR]

Lay abstracts are brief descriptions or summaries of research that are targeted at a general audience. They are held as an important means for the research community to provide greater transparency to the general public and to increase visibility of the pertinent research. This study aims to examine the extent to which lay abstracts published in the journal Autism are comprehensible to a lay audience in terms of readability measures. Results showed that lay abstracts published in Autism were more readable than their corresponding abstracts but were less readable than plain English texts (e.g. news reports). To our knowledge, this is probably the first comparative study on the readability of lay abstracts. Possible explanations for and implications of these findings were offered. Research papers are sometimes hard to follow. Lay abstracts give a short account of research papers. However, it is unclear whether lay abstracts are readable to the lay people. This study examined the readability of 570 abstracts and lay abstracts published between 2020 and 2022 in the journal Autism. We found that that lay abstracts are easier to read than abstracts but are harder to read than news reports. The findings suggest that lay abstracts, on average, are hard to read for the lay people. We propose that the journal and its authors may invite reviewers from outside the research community to test whether a lay abstract is readable. [ABSTRACT FROM AUTHOR]

What are participants and researchers agreeing to when they consent to having data archived and what do they imagine the future life of their data to be? In this paper, we reflect on a project that deliberately started rather than ended with the archive. The Everyday Childhoods project invited children and their families to take part in the creation of an open access public archive documenting everyday childhoods using a range of multimedia data. Families and researchers were invited into the archive, encouraged to imagine different kinds of secondary use and to speak directly to future user of their data through short films and postcards. This paper raises questions concerning the place of the archive in different disciplinary traditions; the roles of researcher and archivist in safekeeping, gatekeeping and caring for data collections; and the place of qualitative longitudinal research as a site of innovation within a new data landscape. [ABSTRACT FROM AUTHOR]

It is well known that victims of intimate partner violence experience numerous barriers to leaving abusive relationships. For ethnic minority and immigrant women these barriers are significantly exacerbated. This metasynthesis explored barriers to help-seeking as experienced by Black, Asian, minority ethnic and immigrant women with experience of intimate partner violence. A review of worldwide literature published in English in peer-reviewed journals on this topic from 2000 to July 2020 produced 2597 relevant articles. After removing duplicates and applying the exclusion criteria, a total of 47 articles were selected for inclusion in the review. The synthesis found that these women faced additional barriers as a result of institutional racism, immigration laws, culture and religion, and issues of cultural competence, and lack of diversity within frontline services. Such barriers, from a range of formal and informal resources, services and other mechanisms of support, served to exacerbate feelings of fear, threat, isolation and powerlessness. The barriers were also further weaponised by perpetrators in order to extend their reign of terror and control. As a result, women were caught in a double-bind – stay in an abusive relationship or face further threats and consequences if they attempted to leave. Whilst our search criteria focused on barriers to help-seeking, many of the papers included in our synthesis also explored facilitators to help-seeking, which are included in our findings and overwhelmingly relate to informal support from females. [ABSTRACT FROM AUTHOR]

Frontline workers, including educators and health practitioners, play an important role in identifying and responding to harmful sexual behavior (HSB) carried out by children and young people. Despite this, there have been no reviews of the evidence about promising practice for how frontline workers could best manage this behavior. This article presents a scoping review of evidence exploring the research question: How can frontline professionals be trained and supported to better manage HSB carried out by children and young people? Multiple databases were searched in July 2020. Inclusion criteria included a focus on professional development or practice relating to children and young people displaying inappropriate sexual behavior or HSB; a population of frontline workers (teachers, health practitioners, coaches, childcare workers); and all study types, including gray literature. Two reviewers screened the articles, and findings from included papers were synthesized according to the method of thematic synthesis. Thirty-one papers were included in the review. Five themes were identified in response to the research question: process of identification and response, knowledge required to identify and respond, skills needed to identify and respond, organization-level supports, and system-level supports. The authors propose the "building blocks" for a promising practice model, which sets out the process of identification and response to HSB, and the knowledge required by frontline workers to support that process. Further, the model identifies the skills required by frontline workers to undertake the process of identification and response, as well as the organization-level and system-level scaffolding needed for good practice. [ABSTRACT FROM AUTHOR]

This discussion paper aimed to reflect on the development of relational connections in the context of a web-based, tailored, asynchronous nursing intervention (VIH-TAVIETM) aimed at empowering people living with HIV in taking their antiretroviral treatment. Our reflection culminates in the Relational Virtual Nursing Practice Model. This paper builds on nurse-researchers and people living with HIV's experiences, nursing theories, and cross-disciplinary work on relational engagement. The model shows the disciplinary principles underpinning VIH-TAVIETM, engagement processes used to create humanistic and supportive relational environment and people's relational experiences and it contributes to the development of conceptual nursing knowledge on how generating meaningful relational nursing care in virtual environments. [ABSTRACT FROM AUTHOR]

Introduction: People with complex physical disabilities unable to change their position independently are at risk of developing postural deformities and secondary complications. 24-hour posture management is needed to protect body structure. With inconsistencies in current service provision, this research aimed to scope the evidence for a 24-hour posture management approach. Method: A scoping review was conducted using four health and social science databases. Inclusion and exclusion criteria were applied; further papers were included through citation chaining. Results: The evidence for 24-hour posture management was often low quality due to the complications of completing robust research studies in this complex specialty. However, many professionals in the field agree that a 24-hour approach to postural care is essential. Conclusion: There is a need for clear national policy and guidance relating to postural care and scope for development of dedicated posture management services. Current NHS service provision is variable and inconsistent. Lack of postural care is a safeguarding and human rights issue. Specialist training and research in postural care within the Occupational Therapy profession is required to raise awareness of the role Occupational Therapists can play in preventing postural deformities and other secondary complications through providing good postural care. [ABSTRACT FROM AUTHOR]

Debates on positionality and partisanship in the research process are long-standing, complex and often highly contentious. Engaging with, and contributing to, both these key debates, this paper introduces the concept of victim-as-researcher. This draws from the author's experiences of undertaking research in Trinidad and Tobago with a group of offenders who had committed similar offences to that which the researcher was herself a victim. There is a paucity of literature which speaks to the experiences of victims of serious, violent crime who subsequently engage in qualitative research with offenders who have been convicted of offences similar to the ones experienced by the researcher and which, therefore, can elicit trauma whilst in the field and through analysis. This paper aims to extend the methodological literature on positionality and victimology by foregrounding the victim-as-researcher as an important category in reflexive sociological and criminological research. [ABSTRACT FROM AUTHOR]

Research that 'grows apart' from its original design and proposal is not uncommon, especially when involving participatory and creative methods. However, the disconnect between research intentions and research realization is seldom probed for the insights offered; this paper addresses this gap. Taking up the conceptual lens of research imaginaries, this paper dives into the tensions and discoveries experienced in between the design and the practice of a multi-site participatory research project. The study involved two groups of young people, in two cities in two countries, with a focus on digital lives. In a commitment to collaboration with artists, senior researchers, research assistants, and young people in community spaces, a complex project emerged. This paper describes the tensions and possibilities of an emergent methodology and in doing so argues for increased attention to the movement of research designs; rather than the adherence to them. [ABSTRACT FROM AUTHOR]