Infection Prevention and Control Standards in Assisted Living Facilities: Are Residents' Needs Being Met?

BackgroundAssisted living facilities (ALFs) provide housing and care to persons unable to live independently, and who often have increasing medical needs. Disease outbreaks illustrate challenges of maintaining adequate resident protections in these facilities.ObjectivesDescribe current state laws on assisted living admissions criteria, medical oversight, medication administration, vaccination requirements, and standards for infection control training.MethodsWe abstracted laws and regulations governing assisted living facilities for the 50 states using a structured abstraction tool. Selected characteristics were compared according to the time period in which the regulation took effect. Selected state health departments were queried regarding outbreaks identified in assisted living facilities.ResultsOf the 50 states, 84% specify health-based admissions criteria to assisted living facilities; 60% require licensed health care professionals to oversee medical care; 88% specifically allow subcontracting with outside entities to provide routine medical services onsite; 64% address medication administration by assisted living facility staff; 54% specify requirements for some form of initial infection control training for all staff; 50% require reporting of disease outbreaks to the health department; 18% specify requirements to offer or require vaccines to staff; 30% specify requirements to offer or require vaccines to residents. Twelve states identified approximately 1600 outbreaks from 2010 to 2013, with influenza or norovirus infections predominating.ConclusionsThere is wide variation in how assisted living facilities are regulated in the United States. States may wish to consider regulatory changes that ensure safe health care delivery, and minimize risks of infections, outbreaks of disease, and other forms of harm among assisted living residents.     

Clinical Comorbidities and Transitions Between Care Settings Among Residents of Assisted Living Facilities: A Repeated Cross-Sectional Study

ObjectiveWe investigate the changes in the sociodemographic characteristics, clinical comorbidities, and transitions between care settings among residents of assisted living facilities.DesignRepeated cross-sectional study.Setting and ParticipantsLinked, individual-level health system administrative data on residents of assisted living facilities in Ontario, Canada, from January 1, 2013, to December 31, 2019.MethodsCounts and proportions were calculated to describe the sociodemographic characteristics and clinical comorbidities. Relative changes and trend tests were calculated to quantify the longitudinal changes in the characteristics of residents of assisted living facilities between 2013 and 2019. A Sankey plot was graphed to display transitions between different care settings (ie, hospital admission, nursing home admission, died, or remained in the assisted living facility) each year from 2013 to 2019.ResultsThere was a 34% relative increase in the resident population size of assisted living facilities (56,975₂₀₁₉ vs 42,600₂₀₁₃). These older adults had a mean age of 87 years, and women accounted for nearly two-thirds of the population across all years. The 5 clinical comorbidities that had the highest relative increases were renal disease (24.3%), other mental health conditions (16.8%), cardiac arrhythmias (9.6%), diabetes (8.5%), and cancer (6.9%). Nearly 20% of the original cohort from 2013 remained in an assisted living facility at the end of 2019, and approximately 10% of that cohort transitioned to a nursing home in any year from 2013 to 2019.Conclusions and ImplicationsResidents of assisted living facilities are an important older adult population that has progressively increased in clinical complexity within less than a decade. Clinicians and policy makers should advocate for the implementation of on-site medical care that is aligned with the needs of these older adults.     

Estimating health care delivery system value for each US state and testing key associations

ObjectiveTo estimate health care systems'' value in treating major illnesses for each US state and identify system characteristics associated with value.Data sourcesAnnual condition‐specific death and incidence estimates for each US state from the Global Burden Disease 2019 Study and annual health care spending per person for each state from the National Health Expenditure Accounts.Study designUsing non‐linear meta‐stochastic frontier analysis, mortality incidence ratios for 136 major treatable illnesses were regressed separately on per capita health care spending and key covariates such as age, obesity, smoking, and educational attainment. State‐ and year‐specific inefficiency estimates were extracted for each health condition and combined to create a single estimate of health care delivery system value for each US state for each year, 1991–2014. The association between changes in health care value and changes in 23 key health care system characteristics and state policies was measured.Data collection/extraction methodsNot applicable.Principal findingsUS state with relatively high spending per person or relatively poor health‐outcomes were shown to have low health care delivery system value. New Jersey, Maryland, Florida, Arizona, and New York attained the highest value scores in 2014 (81 [95% uncertainty interval 72‐88], 80 [72‐87], 80 [71‐86], 77 [69‐84], and 77 [66‐85], respectively), after controlling for health care spending, age, obesity, smoking, physical activity, race, and educational attainment. Greater market concentration of hospitals and of insurers were associated with worse health care value (p‐value ranging from <0.01 to 0.02). Higher hospital geographic density and use were also associated with worse health care value (p‐value ranging from 0.03 to 0.05). Enrollment in Medicare Advantage HMOs was associated with better value, as was more generous Medicaid income eligibility (p‐value 0.04 and 0.01).ConclusionsSubstantial variation in the value of health care exists across states. Key health system characteristics such as market concentration and provider density were associated with value.     

End-of-Life Care Transitions in Assisted Living: Associations With State Staffing and Training Regulations

ObjectiveWe examined the frequency and categories of end-of-life care transitions among assisted living community decedents and their associations with state staffing and training regulations.DesignCohort study.Setting and ParticipantsMedicare beneficiaries who resided in assisted living facilities and had validated death dates in 2018–2019 (N = 113,662).MethodsWe used Medicare claims and assessment data for a cohort of assisted living decedents. Generalized linear models were used to examine the associations between state staffing and training requirements and end-of-life care transitions. The frequency of end-of-life care transitions was the outcome of interest. State staffing and training regulations were the key covariates. We controlled for individual, assisted living, and area-level characteristics.ResultsEnd-of-life care transitions were observed among 34.89% of our study sample in the last 30 days before death, and among 17.25% in the last 7 days. Higher frequency of care transitions in the last 7 days of life was associated with higher regulatory specificity of licensed [incidence risk ratio (IRR) = 1.08; P = .002] and direct care worker staffing (IRR = 1.22; P < .0001). Greater regulatory specificity of direct care worker training (IRR = 0.75; P < .0001) was associated with fewer transitions. Similar associations were found for direct care worker staffing (IRR = 1.15; P < .0001) and training (IRR = 0.79; P < .001) and transitions within 30 days of death.Conclusions and ImplicationsThere were significant variations in the number of care transitions across states. The frequency of end-of-life care transitions among assisted living decedents during the last 7 or 30 days of life was associated with state regulatory specificity for staffing and staff training. State governments and assisted living administrators may wish to set more explicit guidelines for assisted living staffing and training to help improve end-of-life quality of care.     

Pathways into Assisted Living Communities: Admission Limitations and Assessment Requirements Across the United States

ObjectivesLimitations to admission play a critical role in shaping the composition of residents residing within licensed assisted living (AL) communities.DesignWe document variation across 165 licensure classifications in how state agencies limit who AL communities may admit and what assessments are required to make those determinations.Setting and ParticipantsAL regulations and licensed AL communities across all 50 states in 2018.MethodsWe estimated the proportion of all licensed AL communities regulated by admission limitations and identified groups consisting of those that limit admission based on a health-related condition, specified behavior, mental health condition, and/or cognitive impairment as well as those that impose no limitations to admission. We also estimated the proportion of all licensed AL communities required to conduct assessments at time of admission.ResultsThe largest group of ALs (29% nationally) is governed by regulations limiting the admission of persons with a health condition. The next largest group of AL communities (23.6%) limit admissions based on health, specified behavior, mental health conditions, and cognitive impairment. In contrast, 11.1% of licensed AL communities have no regulations restricting admissions. We also found that more than 8 of every 10 licensed communities were required to have residents complete a health assessment at admission, but less than half were required to complete a cognitive assessment.Conclusions and ImplicationsThe variation we observe implies that state agencies have created multiple licensure classifications that serve as a mechanism for sorting types of residents into settings based on their need (eg, health, mental health, cognitive). Although future research should investigate the implications of this regulatory diversity, the categories outlined here may be helpful to clinicians, consumers, and policy makers to better understand the options in their state and how various AL licensure classifications compare to one another.     

COVID‐19: The Time for Collaboration Between Long‐Term Services and Supports,Health Care Systems,and Public Health Is Now

Policy Points

• To address systemic problems amplified by COVID‐19, we need to restructure US long‐term services and supports (LTSS) as they relate to both the health care systems and public health systems. We present both near‐term and long‐term policy solutions.
• Seven near‐term policy recommendations include requiring the uniform public reporting of COVID‐19 cases in all LTSS settings; identifying and supporting unpaid caregivers; bolstering protections for the direct care workforce; increasing coordination between public health departments and LTSS agencies and providers; enhancing collaboration and communication across health, LTSS, and public health systems; further reducing barriers to telehealth in LTSS; and providing incentives to care for vulnerable populations.
• Long‐term reform should focus on comprehensive workforce development, comprehensive LTSS financing reform, and the creation of an age‐friendly public health system.

ContextThe heavy toll of COVID‐19 brings the failings of the long‐term services and supports (LTSS) system in the United States into sharp focus. Although these are not new problems, the pandemic has exacerbated and amplified their impact to a point that they are impossible to ignore. The primary blame for the high rates of COVID‐19 infections and deaths has been assigned to formal LTSS care settings, specifically nursing homes. Yet other systemic problems have been unearthed during this pandemic: the failure to coordinate the US public health system at the federal level and the effects of long‐term disinvestment and neglect of state‐ and local‐level public health programs. Together these failures have contributed to an inability to coordinate with the LTSS system and to act early to protect residents and staff in the LTSS care settings that are hotspots for infection, spread, and serious negative health outcomes.MethodsWe analyze several impacts of the COVID‐19 pandemic on the US LTSS system and policy arrangements. The economic toll on state budgets has been multifaceted, and the pandemic has had a direct impact on Medicaid, the primary funder of LTSS, which in turn has further exacerbated the states’ fiscal problems. Both the inequalities across race, ethnicity, and socioeconomic status as well as the increased burden on unpaid caregivers are clear. So too is the need to better integrate LTSS with the health, social care, and public health systems.FindingsWe propose seven near‐term actions that US policymakers could take: implementing a uniform public reporting of COVID‐19 cases in LTSS settings; identifying and supporting unpaid caregivers; bolstering support for the direct care workforce; increasing coordination between public health departments and LTSS agencies and providers; enhancing collaboration and communication across health, LTSS, and public health systems; further reducing the barriers to telehealth in LTSS; and providing incentives to care for our most vulnerable populations. Our analysis also demonstrates that our nation requires comprehensive reform to build the LTSS system we need through comprehensive workforce development, universal coverage through comprehensive financing reform, and the creation of an age‐friendly public health system.ConclusionsCOVID‐19 has exposed the many deficits of the US LTSS system and made clear the interdependence of LTSS with public health. Policymakers have an opportunity to address these failings through a substantive reform of the LTSS system and increased collaboration with public health agencies and leaders. The opportunity for reform is now.     

Online Customer Reviews of Assisted Living Communities: Association with Community,County, and State Factors

ObjectivesOnline reviews provided by users of assisted living communities may offer a unique source of heretofore unexamined data. We explored online reviews as a possible source of information about these communities and examined the association between the reviews and aspects of state regulations, while controlling for assisted living, county, and state market-level factors.DesignCross-sectional, observational study.Setting and ParticipantsSample included 149,265 reviews for 8828 communities.MethodsPrimary (eg, state regulations) and secondary (eg, Medicare Beneficiary Summary Files) data were used. County-level factors were derived from the Area Health Resource Files, and state-level factors from the integrated Public Use Microdata series. Information on state regulations was obtained from a previously compiled regulatory dataset. Average assisted living rating score, calculated as the mean of posted online reviews, was the outcome of interest, with a higher score indicating a more positive review. We used word cloud to visualize how often words appeared in 1-star and 5-star reviews. Logistic regression models were used to determine the association between online rating and a set of community, county, and state variables. Models were weighted by the number of reviews per assisted living bed.ResultsOverall, 76% of communities had online reviews. We found lower odds of positive reviews in communities with greater proportions of Medicare/Medicaid residents [odds ratio (OR) = 0.986; P < .001], whereas communities located in micropolitan areas (compared with urban), and those in states with more direct care worker hours (per week per bed) had greater odds of high rating (OR = 1.722; P < .001 and OR = 1.018, P < .05, respectively).Conclusions and ImplicationsOnline reviews are increasingly common, including in long-term care. These reviews are a promising source of information about important aspects of satisfaction, particularly in care settings that lack a public reporting infrastructure. We found several significant associations between online ratings and community-level factors, suggesting these reviews may be a valuable source of information to consumers and policy makers.     

Growth of Fee-for-Service Medicare Home-Based Medical Care Within Private Residences and Domiciliary Care Settings in the U.S., 2012–2019

ObjectivesHome-based medical care (HBMC) delivers physician or advanced practice provider–led medical services for patients in private residences and domiciliary settings (eg, assisted living facilities, group/boarding homes). We aimed to examine the time trends in HBMC utilization by care settings.DesignAnalyses of HBMC utilization at the national and state levels during the years 2012–2019.Setting and ParticipantsWith Medicare public use files, we calculated the state-level utilization rate of HBMC among fee-for-service (FFS) Medicare beneficiaries, measured by visits per 1000 FFS enrollees, in private residences and domiciliary settings, both separately and combined.MethodsWe assessed the trend of HBMC utilization over time via linear mixed models with random intercept for state, adjusting for the following state-level markers of HBMC supply and demand: number of HBMC providers, state ranking of total assisted living and residential care capacity, and the proportion of FFS beneficiaries with dementia, dual eligibility for Medicaid, receiving home health services, and Medicare Advantage.ResultsTotal HBMC visits in the United States increased from 3,911,778 in 2012 to 5,524,939 in 2019. The median (interquartile range) state-level HBMC utilization rate per 1000 FFS population was 67.6 (34.1–151.3) visits overall, 17.3 (7.9–41.9) visits in private residences, and 47.7 (23.1–86.6) visits in domiciliary settings. The annual percentage increase of utilization rates was significant for all care settings in crude models (3%–8%), and remained significant for overall visits and visits in domiciliary settings (2%–4%), but not in private residences.Conclusions and ImplicationsThe national-level growth in HBMC from 2012–2019 was largely driven by a growth of HBMC occurring in domiciliary settings. To meet the needs of a growing aging population, future studies should focus efforts on policy and payment issues to address inequities in access to HBMC services for homebound older adults, and examine drivers of HBMC growth at regional and local levels.     

State Variation in Antipsychotic Use Among Assisted Living Residents With Dementia

ObjectivesMore than two-thirds of assisted living (AL) residents have dementia or cognitive impairment and antipsychotics are commonly prescribed for behavioral disturbances. As AL communities are regulated by state-level policies, which vary significantly regarding the care for people with dementia, we examined how antipsychotic prescribing varied across states among AL residents with dementia.DesignThis was an observational study using 20% sample of national Medicare data in 2017.Setting and ParticipantsThe study cohort included Medicare beneficiaries with dementia aged 65 years or older who resided in larger (≥25-bed) ALs in 2017.MethodsThe study outcome was the percentage of eligible AL person-months in which antipsychotics were prescribed for each state. We used a random intercept linear regression model to shrink estimates toward the overall mean use of antipsychotics addressing unstable estimates due to small sample sizes in some states.ResultsA total of 20,867 AL residents with dementia were included in the analysis, contributing to 194,718 person-months of observation. On average, AL residents with dementia were prescribed antipsychotics during 12.6% of their person-months. This rate varied significantly by state, with a low of 7.8% (95% CI 5.9%-10.3%) for Hawaii to a high of 20.5% (95% CI 16.4%-25.3%) for Wyoming.Conclusions and implicationsWe observed significant state variation in the prescribing of antipsychotics among AL residents with dementia using national data. These variations may reflect differences in state regulations regarding the care for AL residents with dementia and suggest the need for further investigation to ensure high quality of care.     

State Variability in Assisted Living Residents’ End-of-Life Care Trajectories

ObjectiveA growing and increasingly vulnerable population resides in assisted living. States are responsible for regulating assisted living and vary in their requirements. Little is known about how this variability translates to differences in the dying experiences of assisted living residents. The objective of this study is to describe assisted living residents’ end-of-life care trajectories and how they vary by state.DesignObservational retrospective cohort study.Setting and ParticipantsUsing Medicare data and a methodology developed to identify beneficiaries residing in larger assisted living communities (25+ beds), we identified a cohort of 40,359 assisted living residents in the continental United States enrolled in traditional Medicare and who died in 2016.MethodsWe used Medicare data and the Residential History File to examine assisted living residents’ locations of care and services received in the last 30 days of life.ResultsNationally, 57% of our cohort died outside of an institutional setting, that is, hospital or nursing home (n = 23,165), 18,396 of whom received hospice at the time of death. Rates of hospitalization and transition to a nursing home increased during the last 30 days of life. We observed significant interstate variability in the adjusted number of days spent in assisted living in the month before death [from 13.6 days (95% confidence interval [CI] 11.8, 15.4) in North Dakota to 24.0 days (95% CI 22.7, 25.2) in Utah] and wider variation in the adjusted number of days receiving hospice in the last month of life, ranging from 2.1 days (95% CI 1.0, 3.2) in North Dakota to 13.8 days (95% CI 12.1, 15.5) in Utah.Conclusions and ImplicationsFindings suggest that assisted living residents’ dying trajectories vary significantly by state. To ensure optimal end-of-life outcomes for assisted living residents, state policy makers should consider how their regulations influence end-of-life care in assisted living, and future research should examine factors (eg, state regulations, market characteristics, provider characteristics) that may enable assisted living residents to die in place and contribute to differential access to hospice services.     

Ensuring patient and public involvement in the transition to AI‐assisted mental health care: A systematic scoping review and agenda for design justice

BackgroundMachine‐learning algorithms and big data analytics, popularly known as ‘artificial intelligence’ (AI), are being developed and taken up globally. Patient and public involvement (PPI) in the transition to AI‐assisted health care is essential for design justice based on diverse patient needs.ObjectiveTo inform the future development of PPI in AI‐assisted health care by exploring public engagement in the conceptualization, design, development, testing, implementation, use and evaluation of AI technologies for mental health.MethodsSystematic scoping review drawing on design justice principles, and (i) structured searches of Web of Science (all databases) and Ovid (MEDLINE, PsycINFO, Global Health and Embase); (ii) handsearching (reference and citation tracking); (iii) grey literature; and (iv) inductive thematic analysis, tested at a workshop with health researchers.ResultsThe review identified 144 articles that met inclusion criteria. Three main themes reflect the challenges and opportunities associated with PPI in AI‐assisted mental health care: (a) applications of AI technologies in mental health care; (b) ethics of public engagement in AI‐assisted care; and (c) public engagement in the planning, development, implementation, evaluation and diffusion of AI technologies.ConclusionThe new data‐rich health landscape creates multiple ethical issues and opportunities for the development of PPI in relation to AI technologies. Further research is needed to understand effective modes of public engagement in the context of AI technologies, to examine pressing ethical and safety issues and to develop new methods of PPI at every stage, from concept design to the final review of technology in practice. Principles of design justice can guide this agenda.     

Reducing administrative costs in US health care: Assessing single payer and its alternatives

ObjectiveExcess administrative costs in the US health care system are routinely referenced as a justification for comprehensive reform. While there is agreement that these costs are too high, there is little understanding of what generates administrative costs and what policy options might mitigate them.Data SourcesLiterature review and national utilization and expenditure data.Study DesignWe developed a simulation model of physician billing and insurance‐related (BIR) costs to estimate how certain policy reforms would generate savings. Our model is based on structural elements of the payment process in the United States and considers each provider''s number of health plan contracts, the number of features in each health plan, the clinical and nonclinical processes required to submit a bill for payment, and the compliance costs associated with medical billing.Data ExtractionFor several types of visits, we estimated fixed and variable costs of the billing process. We used the model to estimate the BIR costs at a national level under a variety of policy scenarios, including variations of a single payer “Medicare‐for‐All” model that extends fee‐for‐service Medicare to the entire population and policy efforts to reduce administrative costs in a multi‐payer model. We conducted sensitivity analyses of a wide variety of model parameters.Principal FindingsOur model estimates that national BIR costs are reduced between 33% and 53% in Medicare‐for‐All style single‐payer models and between 27% and 63% in various multi‐payer models. Under a wide range of assumptions and sensitivity analyses, standardizing contracts generates larger savings with less variance than savings from single‐payer strategies.ConclusionAlthough moving toward a single‐payer system will reduce BIR costs, certain reforms to payer‐provider contracts could generate at least as many administrative cost savings without radically reforming the entire health system. BIR costs can be meaningfully reduced without abandoning a multi‐payer system.     

Barriers to employment of Australian cancer survivors living with geographic or socio‐economic disadvantage: A qualitative study

BackgroundOpportunities for cancer survivors’ employment can both reflect and perpetuate health inequities, as employment is an important social determinant of health. Socio‐economic and geographic disadvantage is associated with greater difficulty finding work, but little is known about work needs of Australian cancer survivors living with disadvantage.ObjectiveThis study examined survivor and health‐care professional (HCP) perspectives on barriers experienced by Australian cancer survivors experiencing disadvantage when attempting to remain at or return to work.MethodFocus groups and individual interviews were held with cancer survivors (N = 15) and oncology and primary HCPs (N = 41), focusing on communities at risk of disadvantage. Participants were asked about employment barriers and facilitators in general and in the context of disadvantage. Themes were identified using framework analysis.ResultsGeographic and socio‐economic disadvantage resulted in specific individual‐ and system‐level barriers. These related to distance from treatment and support services and limited availability and suitability of work for survivors living with geographic disadvantage, and limited availability, security, and flexibility of work and previous unemployment for survivors living with socio‐economic disadvantage. Identified needs included system‐level changes such as public and workplace‐level education, legislative and policy changes, and better access to resources.ConclusionsCancer survivors living with disadvantage experience limited access to flexible employment opportunities and resources, further perpetuating their disadvantage. Promotion of health equity for cancer survivors living with disadvantage requires systemic changes to support attempts to remain at/return to work.Patient or public contributionThis study included cancer survivors and HCPs as investigators, authors and participants.     

Emergency unemployment benefits and health care spending during Covid

ObjectiveTo estimate the impact of the $600 per week Federal Pandemic Unemployment Compensation (FPUC) payments on health care services spending during the Covid pandemic and to investigate if this impact varied by state Medicaid expansion status.Data SourcesThis study leverages novel, publicly available data from Opportunity Insights capturing consumer credit and debit card spending on health care services for January 18–August 15, 2020 as well as information on unemployment insurance claims, Covid cases, and state policy changes.Study DesignUsing triple‐differences estimation, we leverage two sources of variation—within‐state change in the unemployment insurance claims rate and the introduction of FPUC payments—to estimate the moderating effect of FPUC on health care spending losses as unemployment rises. Results are stratified by state Medicaid expansion status.Extraction MethodsNot applicable.Principal FindingsFor each percentage point increase in the unemployment insurance claims rate, health care spending declined by 1.0% (<0.05) in Medicaid expansion states and by 2.0% (<0.01) in nonexpansion states. However, FPUC partially mitigated this association, boosting spending by 0.8% (<0.001) and 1.3% (<0.05) in Medicaid expansion and nonexpansion states, respectively, for every percentage point increase in the unemployment insurance claims rate.ConclusionsWe find that FPUC bolstered health care spending during the Covid pandemic, but that both the negative consequences of unemployment and moderating effects of federal income supports were greatest in states that did not adopt Medicaid expansion. These results indicate that emergency federal spending helped to sustain health care spending during a period of rising unemployment. Yet, the effectiveness of this program also suggests possible unmet demand for health care services, particularly in states that did not adopt Medicaid expansion.     

Medicaid expansions,preconception insurance,and unintended pregnancy among new parents

ObjectiveTo assess the relationship between recent changes in Medicaid eligibility and preconception insurance coverage, pregnancy intention, health care use, and risk factors for poor birth outcomes among first‐time parents.Data SourceThis study used individual‐level data from the national Pregnancy Risk Assessment Monitoring System (2006‐2017), which surveys individuals who recently gave birth in the United States on their experiences before, during, and after pregnancy.Study DesignOutcomes included preconception insurance status, pregnancy intention, stress from bills, early prenatal care, and diagnoses of high blood pressure and diabetes. Outcomes were regressed on an index measuring Medicaid generosity, which captures the fraction of female‐identifying individuals who would be eligible for Medicaid based on state income eligibility thresholds, in each state and year.Data Collection/Extraction MethodsThe sample included all individuals aged 20‐44 with a first live birth in 2009‐2017.Principal FindingsAmong all first‐time parents, a 10‐percentage point (ppt) increase in Medicaid generosity was associated with a 0.7 ppt increase (P = 0.017) in any insurance coverage and a 1.5 ppt increase (P < 0.001) in Medicaid coverage in the month before pregnancy. We also observed significant increases in insurance coverage and early prenatal care and declines in stress from bills and unintended pregnancies among individuals with a high‐school degree or less.ConclusionsIncreasing Medicaid generosity for childless adults has the potential to improve insurance coverage in the critical period before pregnancy and help improve maternal outcomes among first‐time parents.     

Rapid development of a COVID‐19 care planning decision‐aid for family carers of people living with dementia

IntroductionCOVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed.ObjectivesTo coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond.MethodsSemi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads.ResultsThe rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking.ConclusionsCombining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations.Patient or Public ContributionWe worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.     

Reluctant educators and self‐advocates: Older trans adults’ experiences of health‐care services and practitioners in seeking gender‐affirming services

BackgroundTrans‐identifying individuals experience unique barriers and challenges in negotiating health‐care systems due to the cisnormative attitudes and practices which obstruct the receipt of trans‐inclusive care. To date, there has been little exploration of older trans consumers’ experiences of contemporary health‐care services when seeking to transition medically in later life.ObjectivesQualitative findings are presented from a study of trans ageing and trans‐related health and social care needs in Wales, UK (2016‐18). The objectives are to (1) examine supportive and obstructive points of interaction with health‐care professionals, and (2) identify key learning messages for improving trans‐related health care from the perspectives of trans‐identifying adults in later life.DesignTrans‐identifying participants self‐selected to take part in two interviews—a life‐history interview and a semi‐structured interview. Interview data were analysed thematically using the framework method approach.Setting and participantsThis paper focuses on the accounts of 19 participants (50‐74 years of age) who identified as trans and were seeking to transition medically in mid‐ to later life.ResultsFindings indicate how older trans patients are positioned as reluctant educators for GPs in primary care settings and illustrate the transphobic practices and cisnormative assumptions encountered across health‐care interactions and systems that impede their journey of transitioning in later life.Discussion and conclusionsMessages from this study speak to the importance of improving professionals’ knowledge of gender identity diversity across the life course and making changes at a systemic level in redressing cisnormative assumptions and systems that reinforce inequities on the basis of gender identity.