Although care workers in residential aged care are pivotal to maintaining the dignity of older people, little is known about their experiences of work. We know they are undervalued, invisible and unrecognised. This paper explores embodied experiences of care workers supporting older people in residential aged care. Two interactive workshops using the arts-based method of body mapping were conducted with 11 care workers. In making body maps, participants made visible the complex and hidden physical and temporal job demands. They also illustrated ways they hid strain, pain and stress to successfully care for older people. Care workers agreed that hiding some emotions was essential to care and dementia work, but emphasised that organisational and managerial expectations meant they hid emotions they needed to express. Moreover, care workers felt that organisations transferred responsibility for person-centred care onto them. We unpack tensions between hidden labour and the ways in which hiding can be at once individualised, collectively or relationally negotiated and structurally and culturally imposed. Understanding and recognising how the maintenance of care work relies on this tension between hidden labour and different kinds of hiding helps to understand how to improve care and avoid hiding's more insidious consequences.

The use of arts-based methods has been increasingly reported in social sciences, education, health and more recently, disability research. Arts-based research methods offer the potential for researchers and research participants to communicate what cannot be captured in words. In this paper we present a range of arts-based methods used in our research with people with disabilities and their supporters. We explore the background of arts-based methods for disability research and then present five case studies of arts-based methods we have used across our research: Found poetry, body mapping, community mapping, 3D artefacts and photovoice. In unpacking these different examples, we highlight the ways in which arts-based methods help to capture the embodied, emotional and overlapping experiences of people with disability or their supporters. Engaging with the arts-based method empowered participants with diverse experiences of disability—from intellectual disability to dementia—to make choices and determine the ways in which they engaged with the research subject and the topic. Despite some logistical, analytical and ethical challenges, arts-based methods offer disability research powerful tools for accessible engagement and knowledge translation.

LGBTQ+ people living with dementia are a heterogeneous group who are more likely to be socially isolated and may have unique social support structures. After lifetimes of personal, structural and systemic isolation, LGBTQ+ people living with dementia are less likely to seek formal support, particularly from heteronormative and cisgenderist aged care providers. With most people living with dementia relying on informal care, it is important for us to understand the distinct ways in which peer support may operate for socially isolated LGBTQ+ people living with dementia. This paper focusses on the experiences of LGBTQ+ peer supporters who visited LGBTQ+ people living with dementia as part of a formal program in Australia. In focus groups with peer supporters the arts-based method, body mapping, was used to support participants to describe their embodied experiences and needs when caring for and about an LGBTQ+ person living with dementia. The study highlighted that the peer supporters used strengths based, gender affirming approaches to support LGBTQ+ people living with dementia. In line with concepts drawn from ethics of care, these relationships value diversity and emerge from a deep moral commitment to caring for LGBTQ+ elders as an expression of mutual authenticity. Despite this commitment, volunteer visitors experienced grief, not only because the people they visited died, but also at their inability to change systems that did not serve the people they cared for.

BACKGROUND:Over the past decades, self-directed models of care have been implemented throughout the world to support older people, including those with dementia, to live at home. However, there is limited information about how self-directed home care is experienced by older people with cognitive impairment and dementia, and how their thinking informs their care choices and quality of life. METHODS:We used the ASCOT-Easy Read, a staggered reveal method, talk aloud techniques, probing questions, and physical assistance to support users of self-directed home care in Australia with cognitive impairment and dementia to discuss their Social Care Related Quality of Life (SCRQoL). Interviews were recorded, transcribed and analysed thematically in NVivo. Demographic, functional, cognitive and SCRQoL scores were analysed in Excel and SPSS. Analysis of both the quantitative and qualitative data for each participant allowed us to examine consistency or discordance between ratings and participants' comments about their experiences within each domain. RESULTS:Twenty six older people with cognitive impairment and/or dementia completed an interview. Ratings of SCRQoL were more favourable in lower order domains (e.g. food and drink, personal cleanliness, accommodation comfort and cleanliness and safety) than in the higher order domains (e.g. occupation and social participation). Overall SCRQOL also varied significantly from 0.40 to 0.97. Despite variable ratings, all participants described unmet needs associated with limitations in personal function and mobility, transport and the amount and flexibility of home care services they received. Qualitative comments suggest many experienced more significant limitations than some of their ratings may imply. This was attributed to adaptation and acceptance of limitations as a normal part of aging. The choice to remain living in one's own home was perceived as the most important outcome. CONCLUSIONS:Some older people living at home with cognitive impairment and/or dementia adapt and accept their limitations as a normal part of the aging process. This affects expectations about their lives at home and their support. Rather than relying on self-direction, supports to live well at home could be enhanced by a greater emphasis on comprehensive needs assessment and more supports to promote reablement and enhance personal and community level participation.

Background Improving adherence to pre-exposure prophylaxis (PrEP) via digital health interventions (DHIs) for young sexual and gender minority men who have sex with men (YSGMMSM) is promising for reducing the HIV burden. Measuring and achieving effective engagement (sufficient to solicit PrEP adherence) in YSGMMSM is challenging. Objective This study is a secondary analysis of the primary efficacy randomized controlled trial (RCT) of Prepared, Protected, Empowered (P3), a digital PrEP adherence intervention that used causal mediation to quantify whether and to what extent intrapersonal behavioral, mental health, and sociodemographic measures were related to effective engagement for PrEP adherence in YSGMMSM. Methods In May 2019, 264 YSGMMSM were recruited for the primary RCT via social media, community sites, and clinics from 9 study sites across the United States. For this secondary analysis, 140 participants were eligible (retained at follow-up, received DHI condition in primary RCT, and completed trial data). Participants earned US currency for daily use of P3 and lost US currency for nonuse. Dollars accrued at the 3-month follow-up were used to measure engagement. PrEP nonadherence was defined as blood serum concentrations of tenofovir-diphosphate and emtricitabine-triphosphate that correlated with ≤4 doses weekly at the 3-month follow-up. Logistic regression was used to estimate the total effect of baseline intrapersonal measures on PrEP nonadherence, represented as odds ratios (ORs) with a null value of 1. The total OR for each intrapersonal measure was decomposed into direct and indirect effects. Results For every US $1 earned above the mean (US $96, SD US $35.1), participants had 2% (OR 0.98, 95% CI 0.97-0.99) lower odds of PrEP nonadherence. Frequently using phone apps to track health information was associated with a 71% (OR 0.29, 95% CI 0.06-0.96) lower odds of PrEP nonadherence. This was overwhelmingly a direct effect, not mediated by engagement, with a percentage mediated (PM) of 1%. Non-Hispanic White participants had 83% lower odds of PrEP nonadherence (OR 0.17, 95% CI 0.05-0.48) and had a direct effect (PM=4%). Participants with depressive symptoms and anxiety symptoms had 3.4 (OR 3.42, 95% CI 0.95-12) and 3.5 (OR 3.51, 95% CI 1.06-11.55) times higher odds of PrEP nonadherence, respectively. Anxious symptoms largely operated through P3 engagement (PM=51%). Conclusions P3 engagement (dollars accrued) was strongly related to lower odds of PrEP nonadherence. Intrapersonal measures operating through P3 engagement (indirect effect, eg, anxious symptoms) suggest possible pathways to improve PrEP adherence DHI efficacy in YSGMMSM via effective engagement. Conversely, the direct effects observed in this study may reflect existing structural disparity (eg, race and ethnicity) or behavioral dispositions toward technology (eg, tracking health via phone apps). Evaluating effective engagement in DHIs with causal mediation approaches provides a clarifying and mechanistic view of how DHIs impact health behavior. Trial Registration ClinicalTrials.gov; NCT03320512; https://clinicaltrials.gov/study/NCT03320512

The significance of home is broadly recognised as representing selfhood, safety and autonomy. For older people, especially those with dementia, the ability to age in place at home can be threatened by a necessary move into a care home. Home has heightened importance for people with dementia. We know most people want to stay in their own homes, but there is limited research which explores what home means for people with dementia when they move into care homes. Based in a care home in regional New South Wales, Australia, this study used the arts-based method, body mapping, to explore what home meant to people with dementia and/or cognitive impairment. Seven body maps were co-created by current residents (four), family members and supporters (six) and researchers (three). The findings of the body-mapping process highlighted that home is much more than a physical location. Home meant having the ability to carry out practices and rituals, use objects, maintain relationships and experience sensations that are personally meaningful, and which differ from one person to the next. Their body maps revealed that in care homes, people could not ‘do home’ anymore because many of the practices, objects, people and places that mattered to them were no longer accessible. Body mapping was a useful method that facilitated the exploration of a holistic expression of home that would not have been possible with more traditional methods. For people with dementia, home was not only embodied and spatial, but also temporal, helping us to understand the ways in which care homes might facilitate a greater sense of home for people with dementia.

Background and Objectives:Benzodiazepine (BZD) use in older adults after acute ischemic stroke (AIS) is common. We aimed to assess the risk of falls or fall-related injuries (FRIs) in older adults after the use of BZDs during the acute poststroke recovery period. Methods:We emulated a hypothetical randomized trial of BZD use during the acute poststroke recovery period using linked data from the Get With the Guidelines Stroke Registry and Mass General Brigham's electronic health records. Our cohort included patients aged 65 years and older with an AIS admission between 2014 and 2021, no documented previous stroke, and no BZD prescriptions in the 3 months before admission. The potential for immortal time and confounding bias was addressed separately using inverse probability weighting. Results:We analyzed data from 495 patients who initiated inpatient BZDs within 3 days of admission and 2,564 who did not. After standardization, the estimate was 694 events per 1,000 (95% CI 676-709) for the BZD initiation strategy and 584 events per 1,000 (95% CI 575-595) for the noninitiation strategy. Subgroup analyses showed risk differences of 142 events per 1,000 (95% CI 111-165) and 85 events per 1,000 (95% CI 64-107) for patients aged 65-74 years and 75 years and older, respectively. Risk differences were 187 events per 1,000 (95% CI 159-206) for patients with minor (NIH Stroke Severity Scale score ≤ 4) AIS and 32 events per 1,000 (95% CI 10-58) for those with moderate-to-severe AIS. Discussion:Initiating BZDs within 3 days of an AIS is associated with an elevated ten-day risk of falls or FRIs, particularly for patients aged 65-74 years and for those with mild stroke. This underscores the need for caution when initiating BZDs, especially among individuals likely to be ambulatory during the acute and subacute poststroke period.

While qualitative researchers on sensitive topics spend significant and important time assessing and mitigating risks for their research participants, there is much less focus on risks to researchers doing this work. Sensitive qualitative research requires researchers to empathise with participants talking about some of life's most challenging moments, and exposure to this can be deeply emotional and even traumatic for researchers. Researchers need a range of strategies to care for themselves throughout the research process. Currently, verbal and written strategies in line with researcher critical reflection and reflexivity are often advocated as key ways of mitigating the emotional impact of research. There is increasing evidence that arts-based approaches facilitate different kinds of reflections on emotional and embodied experiences. This paper describes how the arts-based method, body mapping, can be used by researchers to support researcher reflection on qualitative research. The process of creating, describing and reflecting on the embodied experience of doing the research through body mapping facilitated not only an engagement with the emotions elicited during the project but also illuminated absences and future actions. The paper provides clear guidelines for other researchers wishing to try the approach and also points to the need for institutional and structural responsibility for researcher health.

Immigrants in the United States are at increased risk of diabetes-related complications due to delayed diagnoses compared with US-born individuals. Immigration-related federal policies may support immigration enforcement activities and restrict some immigrants' access to health insurance and other publicly funded resources. Conversely, state and county-level sanctuary policies may reduce the fear of deportation and increase mobility in the community, improving the accessibility of essential pharmacological treatment for type 2 diabetes patients. This retrospective cohort study estimated the odds of receiving glucose-lowering medication prescriptions by the county's sanctuary policy environment for patients within a nationwide network of community health centers. We did not find statistically significant associations between sanctuary policies and annual prescription rates. The associations were not modified by nativity or race/ethnicity. Notably, compared to US-born patients, immigrants had higher odds of receiving prescriptions regardless of the sanctuary policy environment, emphasizing other potential influences on the receipt of anti-diabetes prescriptions for community health center patients.

Reported benefits of peer work include sharing lived experience and building a relationship of support. People with disability are not a homogenous group and do not necessarily share the same lived experience as each other. Peer workers with disability commonly share with their peers systemic exclusion, rather than the experience of navigating a specific disability type. Peer workers therefore need to have a strong sense of their own identity and of their lived experience, and to understand the sources and impacts of ableism and exclusion. This qualitative study of a peer worker model used inclusive research methods to examine the experiences of seven peer workers supporting people with disability to make community connections outside their group home environment. The researchers concluded that to be effective, peer work models need to be based in a theoretical framework that acknowledges differences among people with disability.

An expanded view of agency as nuanced and embodied can help us recognise the agency of people with dementia as citizens in everyday life. Places such as gardens, with their sensory and material appeal, have potential to support this but how people with dementia experience gardens is not well understood. This study aimed to explore how people with dementia experience nuanced agency and citizenship in their domestic home gardens, and to identify enabling practices. The research involved conducting walking-with-video interviews with six participants in their gardens and producing narrative videos. A conceptual framework of agency was applied in analysis of visual and spoken data to explore participants' experiences of agency. Participants experienced nuanced forms of agency in their home gardens as they engaged seamlessly with the sensory aspects of their garden and mindfully with the cycle of life. Social connectedness was limited for some participants, who experienced citizenship in other ways, as embodied or envisioned. This research identified the potential for participants to experience new forms of citizenship and discourse. Further research to explore nuanced agency and citizenship in people with dementia over time and in other garden settings is recommended.

While survey research design tends to prioritise closed questions with predetermined responses, many surveys conclude with an open-ended ‘anything else you would like to tell us?’ question. This question, designed to elicit feedback or create opportunities for respondents to share additional information, offers significant potential for insight into respondents’ experiences. Yet, the extent to which these open-ended data are listened to remains opaque. In this article, we outline and reflect on our approach to a reflexive thematic analysis of responses to an open-ended survey question, to foreground listening. Drawing on responses ( n = 1746) from a national survey of informal carers in Australia, we explore how the final ‘anything else?’ style question of a survey offers scope for fostering ongoing engagement (via survey feedback and context), recognising less visible experiences (through detailed personal accounts), and attending to respondents’ needs (via calls for attention and action). We discuss our approach to sociological listening, and the practicalities therein, including experiences of discomfort, and the challenges of responding to responses. In doing so, we argue that engagement with the data derived from open-ended survey responses is not only fruitful for generating feedback and contextualisation within self-administered survey design, but that such data also hold considerable opportunities for meaningful listening, particularly in contexts where respondents lack recognition and visibility.

Objectives Despite easy-to-use tools like the Cohort Builder, using All of Us Research Program data for complex research questions requires a relatively high level of technical expertise. We aimed to increase research and training capacity and reduce barriers to entry for the All of Us community through an R package, allofus. In this article, we describe functions that address common challenges we encountered while working with All of Us Research Program data, and we demonstrate this functionality with an example of creating a cohort of All of Us participants by synthesizing electronic health record and survey data with time dependencies.Target audience All of Us Research Program data are widely available to health researchers. The allofus R package is aimed at a wide range of researchers who wish to conduct complex analyses using best practices for reproducibility and transparency, and who have a range of experience using R. Because the All of Us data are transformed into the Observational Medical Outcomes Partnership Common Data Model (OMOP CDM), researchers familiar with existing OMOP CDM tools or who wish to conduct network studies in conjunction with other OMOP CDM data will also find value in the package.Scope We developed an initial set of functions that solve problems we experienced across survey and electronic health record data in our own research and in mentoring student projects. The package will continue to grow and develop with the All of Us Research Program. The allofus R package can help build community research capacity by increasing access to the All of Us Research Program data, the efficiency of its use, and the rigor and reproducibility of the resulting research.

Objective: To identify, examine, and map the characteristics of knowledge of nature-based design in stroke rehabilitation facilities, examine how research in this field has been conducted and identify gaps in knowledge. Background: Many stroke survivors have wide ranging impacts, resulting in long hospital stays to undertake rehabilitation. The physical environment can influence brain recovery; however, there is limited evidence to support the design of effective rehabilitation environments. Conversely, the health benefits available from connection with nature are well established. A nature-based design approach may have benefits and implications for the physical environment of inpatient stroke rehabilitation facilities; however, it is unclear what evidence exists in this field. Method: This scoping review followed the JBI methodological guidance for the conduct of scoping reviews, with systematic searches of six databases. Results: Twenty-eight studies were included in the review. Aims and research methods varied widely. Investigations in 19 studies related to gardens and other designed outdoor nature-based environments. Other studies explored natural analogues, nature inside, inside/outside connections, and the natural environment. Findings from the studies were spread across the fields of design, use, exposure to, and engagement in nature-based environments. Conclusion: The characteristics of knowledge underpinning nature-based design in stroke rehabilitation environments are highly diverse, and significant gaps exist in the evidence base. A framework developed during this review for mapping knowledge on the intentions and impacts for spaces and services in this field assisted to identify these gaps and may be applied to other areas of healthcare design research.

IMPORTANCE:. Failure to recognize and address data missingness in cohort studies may lead to biased results. Although Strengthening the Reporting of Observational Studies in Epidemiology reporting guidelines advocate data missingness reporting, the degree to which missingness is reported and addressed in the critical care literature remains unclear. OBJECTIVES:. To review published ICU cohort studies to characterize data missingness reporting and the use of methods to address it. DESIGN, SETTING, AND PARTICIPANTS:. We searched the 2022 table of contents of 29 critical care/critical care subspecialty journals having a 2021 impact factor greater than or equal to 3 to identify published prospective clinical or retrospective database cohort studies enrolling greater than or equal to 100 patients. MAIN OUTCOMES AND MEASURES:. In duplicate, two trained researchers conducted a manuscript/supplemental material PDF word search for “missing*” and extracted study type, patient age, ICU type, sample size, missingness reporting, and the use of methods to address it. RESULTS:. A total of 656 studies were reviewed. Of the 334 of 656 (50.9%) studies mentioning missingness, missingness was reported for greater than or equal to 1 variable in 234 (70.1%) and it exceeded 5% for at least one variable in 160 (47.9%). Among the 334 studies mentioning missingness, 88 (26.3%) used exclusion criteria, 36 (10.8%) used complete-case analysis, and 164 (49.1%) used a formal method to avoid missingness. In these 164 studies, imputation only was used in 100 (61.0%), an analytic strategy only in 24 (14.6%), and both in 40 (24.4%). Only missingness greater than 5% (in ≥ 1 variable) was independently associated with greater use of a missingness method (adjusted odds ratio 2.91; 95% CI, 1.85–4.60). Among 140 studies using imputation, multiple imputation was used in 87 studies (62.1%) and simple imputation in 49 studies (35.0%). For the 64 studies using an analytic method, 12 studies (18.8%) assigned missingness as an unknown category, whereas sensitivity analysis was used in 47 studies (73.4%). CONCLUSIONS AND RELEVANCE:. Among published critical care cohort studies, only half mentioned result missingness, one-third reported actual missingness and only one-quarter used a method to manage missingness. Educational strategies to promote missingness reporting and resolution methods are required.

Abstract People living with dementia are often presumed to have no agency or capacity to act in the social world. They are often excluded from participating in research while research methodologies may not capture their embodied engagement with people and places. Yet, like everyone, people with dementia can express their agency in nuanced ways, for example, through emotions or embodied expression. In the conceptual framework discussed here, nuanced agency is conceived as consisting of non-deliberative elements (embodied, emotional, habituated, reflexive and intersubjective) and deliberative elements (choices or decisions and facilitative). Although people with dementia have been found to benefit from gardens with their sensory appeal, how they experience gardens is not well understood. This critical interpretive synthesis aims to explore how people with dementia experience nuanced forms of agency and citizenship in gardens. A conceptual framework of agency was developed to address the aim and support the analysis. Analysis of the 15 included studies highlighted the value of the conceptual framework in identifying a wider and more granular array of nuanced agency expressed in embodied form and through dialogue. This included expressions of intersubjective and facilitative agency that informed opportunities for people with dementia to experience relational citizenship socially in communal garden settings. These findings suggest an opportunity for researchers to explore the embodied agency of people living with dementia more comprehensively by applying theoretical concepts of agency. Further testing of the framework’s utility for guiding collection and analysis of primary data involving people with dementia in garden settings is recommended.

People with disability from Syrian and Iraqi refugee backgrounds living in Australia have limited access to information and resources in Arabic language. Our study aim was to use a co-design process to create a suite of Arabic-language resources to increase information access and build capacity of people with disability and family members from refugee backgrounds to use services, and of disability and refugee services to provide relevant support. Following a rapid literature review about access to supports and services for people with disability from refugee backgrounds, workshops were held with 38 people with disability and family members from Syrian and Iraqi refugee backgrounds to identify service access barriers. An online bi-lingual co-design group involving six people with disability and family members, six service providers and four researchers then developed resource content and formats to address identified barriers. Professional video production companies developed the visual resources. A co-developed dissemination plan ensured the resources reached target audiences. This paper details the PAR bilingual co-design method used and explains how using this method resulted in an active and equitable partnership through which all members’ capacity and understanding was built resulting in a range of practical resources for use by those who reported a need but limited access.

ABSTRACTObjectiveThe National Institutes of Health’s All of Us Research Program addresses gaps in biomedical research by collecting health data from diverse populations. Pregnant individuals have historically been underrepresented in biomedical research, and pregnancy-related research is often limited by data availability, sample size, and inadequate representation of the diversity of pregnant people. We aimed to identify pregnancy episodes with high-quality electronic health record (EHR) data in All of Us Research Program data and evaluate the program’s utility for pregnancy-related research.Materials and MethodsWe used an algorithm to identify pregnancy episodes in All of Us EHR data. We described these pregnancies, validated them with additional data, and compared them to national statistics.ResultsOur study identified 18,970 pregnancy episodes from 14,234 participants; other possible pregnancy episodes had low-quality or insufficient data. Validation against people who reported a current pregnancy on an All of Us survey found low false positive and negative rates. Demographics were similar in some respects to national data; however, Asian-Americans were underrepresented, and older, highly educated pregnant people were overrepresented.DiscussionOur approach demonstrates the capacity of All of Us to support pregnancy research and reveals the diversity of the pregnancy cohort. However, we noted an underrepresentation among some demographics. Other limitations include measurement error in gestational age and limited data on non-live births.ConclusionThe wide variety of data in the All of Us program, encompassing EHR, survey, genomic, and Fitbit data, offers a valuable resource for studying pregnancy, yet care must be taken to avoid biases.