Supported decision-making with persons with dementia: a scoping review protocol in partnership with lived experts.

INTRODUCTION: The United Nations Convention on the Rights of Persons with Disabilities asserts that all persons with disabilities have the right to receive the support they require to participate in decisions that affect them. Yet, persons with dementia continue to be excluded from decisions on issues that matter to them. Our planned scoping review seeks to address this gap by documenting the current knowledge on supported decision-making for persons with dementia and informing the next steps for research and practice. METHODS AND ANALYSIS: We will use Arksey and O'Malley's (2005) six-stage framework to guide our review of the English scientific literature (2005 onwards), searching the following databases: MEDLINE, PsycINFO, CINAHL, AgeLine and the Social Science Abstracts. Our review will focus on primary studies examining supported decision-making for persons with dementia, including the voices of those with dementia. Guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews, we will identify (1) domains of supported decision-making discussed in the empirical literature and (2) practices/factors that facilitate or inhibit supported decision-making. Consultations with persons with dementia and their care partners will provide insights into lived experiences, helping identify gaps between research literature and lived realities. The preliminary title and abstract search for eligible articles were conducted between August and October 2023 and updated in June 2024, yielding 56 eligible articles for review. ETHICS AND DISSEMINATION: This scoping review will be conducted following the standards of the Tri-Council Policy Statement for Ethical Conduct for Research Involving Humans (1998 with 2000, 2002 and 2005 amendments). The procedures for eliciting feedback from persons with dementia and their care partners were approved by the Office of Research Ethics Board at McGill University (Reference # 23-08-048). Dissemination of review findings to persons with dementia and care partners will occur during ongoing community consultations. Visual aids and brief lay summaries will be used to facilitate input and dialogue. Dissemination to the broader practice and research communities will include workshops conducted in collaboration with study partners and presentations and publications in peer-reviewed forums.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. RESEARCH DESIGN AND OBJECTIVE: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. FINDINGS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. DISCUSSION AND IMPLICATIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PATIENT OR PUBLIC CONTRIBUTION: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

Acceptability and preliminary effects of the volunteer-supported Meaningful Moments program to engage older adults with advanced dementia on a hospital-based specialized dementia care unit: a mixed methods study.

BACKGROUND: Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia. METHODS: A mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants' characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data. RESULTS: A total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress. CONCLUSIONS: Using a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.

Safety and efficacy outcomes of early cessation of anti-PD1 therapy in patients 80 years or older: A retrospective cohort study.

Older patients have similar immune checkpoint inhibitor efficacy and rates of adverse events as younger patients, but appear to have decreased tolerability, particularly in the oldest patient cohort (>80 years), often leading to early cessation of therapy. We aimed to determine whether early discontinuation impacts efficacy of anti-PD-1 therapy in patients ≥80 years old. In this retrospective, multicenter, international cohort study, we examined 773 patients with 4 tumor types who were at least 80 years old and treated with anti-PD-1 therapy. We determined response rate, overall survival (OS), and progression-free survival (PFS) in patients who discontinued therapy early (<12 months) for reasons other than progression or death. We used descriptive statistics for demographics, response, and toxicity rates. Survival statistics were described using Kaplan Meier curves. Median (range) age at anti-PD-1 initiation was 83.0 (75.8-97.0) years. The cancer types included were melanoma (n = 286), non-small cell lung cancer (NSCLC) (n = 345), urothelial cell carcinoma (UCC) (n = 108), and renal cell carcinoma (RCC) (n = 34). Of these, 102 met the primary endpoint of <12 months to discontinuation for reasons other than death or progression. Median PFS and OS, respectively, for these patients were 34.4 months and 46.6 months for melanoma, 15.8 months and 23.4 months for NSCLC, and 10.4 months and 15.8 months for UCC. This study suggests geriatric patients who have demonstrated therapeutic benefit and discontinued anti-PD-1 therapy at less than 12 months of duration for reasons other than progression may have durable clinical benefit without additional therapy.

Design and Methods of the Early Age-Related Hearing Loss Investigation Randomized Controlled Trial.

OBJECTIVE: Hearing loss has been identified as a major modifiable risk factor for cognitive decline. The Early Age-Related Hearing Loss Investigation (EARHLI) study will assess the mechanisms linking early age-related hearing loss (ARHL) and cognitive impairment. STUDY DESIGN: Randomized, controlled, single-site, early phase II, superiority trial. SETTING: Tertiary academic medical center. PARTICIPANTS: One hundred fifty participants aged 55 to 75 years with early ARHL (severity defined as borderline to moderate) and amnestic mild cognitive impairment will be included. INTERVENTIONS: Participants will be randomized 1:1 to a best practice hearing intervention or a health education control. MAIN OUTCOME MEASURES: The primary study outcome is cognition measured by the Alzheimer Disease Cooperative Study-Preclinical Alzheimer Cognitive Composite. Secondary outcomes include additional measures of cognition, social engagement, and brain organization/connectivity. RESULTS: Trial enrollment will begin in early 2024. CONCLUSIONS: After its completion in 2028, the EARHLI trial should offer evidence on the effect of hearing treatment versus a health education control on cognitive performance, social engagement, and brain organization/connectivity in 55- to 75-year-old community-dwelling adults with early ARHL and amnestic mild cognitive impairment.

Phase II trial of vaccination with autologous, irradiated melanoma cells engineered by adenoviral mediated gene transfer to secrete granulocyte-macrophage colony stimulating factor in patients with stage III and IV melanoma.

Background: In the era of immune checkpoint blockade, the role of cancer vaccines in immune priming has provided additional potential for therapeutic improvements. Prior studies have demonstrated delayed type hypersensitivity and anti-tumor immunity with vaccines engineered to secrete granulocyte-macrophage colony-stimulating factor (GM-CSF). The safety, efficacy and anti-tumor immunity of GM-CSF secreting vaccine in patients with previously treated stage III or IV melanoma needs further investigation. Methods: In this phase II trial, excised lymph node metastases were processed to single cells, transduced with an adenoviral vector encoding GM-CSF, irradiated, and cryopreserved. Individual vaccines were composed of 1x106, 4x106, or 1x107 tumor cells, and were injected intradermally and subcutaneously at weekly and biweekly intervals. The primary endpoints were feasibility of producing vaccine in stage III patients and determining the proportion of patients alive at two years in stage IV patients. Results: GM-CSF vaccine was successfully developed and administered in all 61 patients. Toxicities were restricted to grade 1-2 local skin reactions. The median OS for stage III patients (n = 20) was 71.1 (95% CI, 43.7 to NR) months and 14.9 (95%CI, 12.1 to 39.7) months for stage IV patients. The median PFS in stage III patients was 50.7 (95%CI, 36.3 to NR) months and 4.1 (95% CI, 3.0-6.3) months in stage IV patients. In the overall population, the disease control rate was 39.3% (95%CI, 27.1 to 52.7%). In stage III patients, higher pre-treatment plasma cytokine levels of MMP-1, TRAIL, CXCL-11, CXCL-13 were associated with improved PFS (p<0.05 for all). An increase in post-vaccination levels of IL-15 and TRAIL for stage III patients was associated with improved PFS (p=0.03 for both). Similarly, an increase in post-vaccination IL-16 level for stage IV patients was associated with improved PFS (p=0.02) and clinical benefit. Conclusions: Vaccination with autologous melanoma cells secreting GM-CSF augments antitumor immunity in stage III and IV patients with melanoma, is safe, and demonstrates disease control. Luminex data suggests that changes in inflammatory cytokines and immune cell infiltration promote tumor antigen presentation and subsequent tumor cell destruction. Additional investigation to administer this vaccine in combination with immune checkpoint inhibitors is needed.

Exploring the Role of Nurses in Advance Care Planning Within Long-Term Care Homes: A Qualitative Study.

Background: Residents in long-term care homes (LTCHs) are often diagnosed with chronic, life-limiting illnesses, and it is now a common site to provide high levels of care and eventual death. There is an urgent need to address communication gaps and uncertainties surrounding resident's end of life preferences. Nurses are well situated to be key facilitators of necessary advance care planning (ACP), ensuring residents have discussions with family, substitute decision-makers and healthcare providers regarding future health and personal care preferences. However, LTCHs present unique challenges for nurses due to not only complex comorbidities but also staffing dynamics. Purpose: This study explored the experiences and perceptions of Registered Nurses (RNs) and Registered Practical Nurse (RPNs) in LTCHs regarding their role in engaging residents and families in ACP discussions. Methods: Qualitative interpretive descriptive methodology was used. Data were collected from two LTCHs in Southern Ontario with a sample of 15 nurses (7 RNs and 8 RPNs). Analysis involved review of semistructured interviews, field notes, and utilizing constant comparison within an inductive approach. Results: Power and authority dynamics in LTCH's was an overarching theme in the data, with four subthemes: (1) Nurses lacking clarity about ACP, (2) nurses' uncertainty regarding their role in ACP, (3) nurses feeling uncomfortable engaging in ACP discussions, and (4) nurses struggling to support families in ACP discussions. Conclusion: Recommendations for nurses, healthcare providers, LTCH administrators, and policy makers include: (1) development of policies which support, from a systemic level, nurses to feel safe while engaging in ACP; (2) reassessing LTCH's hierarchical structure, and clarifying RN, RPN, and interdisciplinary team members roles in ACP; (3) developing culture change that allows a team and person-centered approach to ACP; and (4) providing ongoing education and mentorship for nurses to manage family dynamics and expand their understanding of ACP beyond a biomedical lens.

Implementation of an Advance Care Planning Intervention in Nursing Homes: An International Multiple Case Study.

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

Risk of Thromboembolism in Patients Receiving Immunotherapy-Based Combinations as Front-Line Therapy for Metastatic Renal Cell Carcinoma.

BACKGROUND: Most patients with treatment-naïve metastatic renal cell carcinoma (mRCC) receive combination-based immunotherapy with either 2 immune-oncology checkpoint inhibitors (IO/IO) or an IO agent in combination with a vascular endothelial growth factor receptor (VEGF-R) tyrosine kinase inhibitor (IO/TKI). The rates of thromboembolism (TE) in these cohorts are not clearly described and can potentially impact decision-making between IO/IO and IO/TKI. METHODS: We conducted a retrospective investigation of patients with treatment-naïve mRCC treated with IO-based combinations between January 2015 and April 2021 at the Cleveland Clinic. TE events, including venous and arterial, were identified in each group. Competing risk regression was done to identify factors associated with the development of TE following therapy, with all-cause mortality treated as a competing event. RESULTS: Of 180 patients identified, 77 (43%) received IO/TKI and 103 (57%) received IO/IO. Median age was 65 years, 75% were male, and 80% had clear cell histology. Baseline characteristics were similar between the 2 groups. At a median follow-up of 22.0 months, 10.0% of all patients had a TE. The one-year incidence of TE was 8.1% (95% CI: 3.3%-15.8%) with IO/TKI and 9.8% (95% CI: 5.0%-16.5%) with IO/IO and was not significantly different between the 2 groups (HR 0.89, 95% CI: 0.35%-2.28%). Occurrence of TE was associated with decreased overall survival regardless of IO/IO or IO/TKI therapy (HR 2.80, 95% CI: 1.57-5.02). There was no difference in incidence of TE based on patient age, gender, prior history of TE, International Metastatic Renal Cell Carcinoma (IMDC) risk group, or Khorana score. CONCLUSIONS: Incidence of TE is similar between IO/IO and IO/TKI regimens in treatment-naïve mRCC and is also associated with decreased overall survival. While risk of TE may not guide decision-making in choice of front-line mRCC therapy, careful attention should be given to the high risk of TE in this population.

Methodological and ethical challenges in designing and conducting research at the end of life: A systematic review of qualitative and textual evidence.

AIM: This systematic review aims to identify methodological and ethical challenges in designing and conducting research at the end of life from the perspective of researchers and provide a set of recommendations. BACKGROUND: Conducting research with patients and family carers facing end-of-life issues is ethically and methodologically complex. DESIGN: A systematic review was conducted. DATA SOURCES: Four databases (MEDLINE, EMBASE, CINAHL, PsycInfo) were searched from inception until the end of 2021 in February 2022. REVIEW METHODS: The Preferred Reporting Items for Systematic Reviews was followed, and the JBI Approach to qualitative synthesis was used for analysis. RESULTS: Seventeen of 1983 studies met inclusion criteria. Data were distilled to six main themes. These included (1) the need for flexibility at all stages of the research process; (2) careful attention to timing; (3) sensitivity in approach; (4) the importance of stakeholder collaboration; (5) the need for unique researcher skills; and (6) the need to deal with the issue of missing data. CONCLUSION: The findings illuminate several considerations that can inform training programmes, ethical review processes and research designs when embarking on research in this field.

What Do We Know About Threat-Related Perceptual Decision Making?

The ability to make rapid and precise decisions regarding the presence or absence of threats in our environment is critical for our survival. While threatening stimuli may be detected more accurately and faster due to the "bottom-up" salience of their features, in the real-world, these stimuli are often encountered in familiar environments in which "top-down" cues signal their arrival. There has been significant progress in our understanding of the mechanisms by which we make perceptual decisions regarding relatively routine stimuli; however, the mechanisms of threat-related perceptual decision-making remain unclear. In this paper, we discuss the psychological, computational, and neural mechanisms by which information from threatening stimuli is integrated with our prior knowledge from cues and surrounding contexts to guide perceptual decision-making.

Evaluation of the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme: a protocol of a cluster randomised control trial.

INTRODUCTION: Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC programme. METHODS AND ANALYSIS: A cross-jurisdictional, effectiveness-implementation type II hybrid cluster randomised control trial design will be used to assess the SPA-LTC programme for 18 LTC homes (six homes within each of three provinces). Randomisation will occur at the level of the LTC home within each province, using a 1:1 ratio (three homes in the intervention and control groups). Baseline staff surveys will take place over a 3-month period at the beginning for both the intervention and control groups. The intervention group will then receive facilitated training and education for staff, and residents and their family members will participate in the SPA-LTC programme. Postintervention data collection will be conducted in a similar manner as in the baseline period for both groups. The overall target sample size will be 594 (297 per arm, 33 resident/family member participants per home, 18 homes). Data collection and analysis will involve organisational, staff, resident and family measures. The primary outcome will be a binary measure capturing any emergency department use in the last 6 months of life (resident); with secondary outcomes including location of death (resident), satisfaction and decisional conflict (family), knowledge and confidence implementing a palliative approach (staff), along with implementation outcomes (ie, feasibility, reach, fidelity and perceived sustainability of the SPA-LTC programme). The primary outcome will be analysed via multivariable logistic regression using generalised estimating equations. Intention-to-treat principles will be used in the analysis. ETHICS AND DISSEMINATION: The study has received ethical approval. Results will be disseminated at various presentations and feedback sessions; at provincial, national and international conferences, and in a series of manuscripts that will be submitted to peer-reviewed, open access journals. TRIAL REGISTRATION NUMBER: NCT039359.

Neighborhood Opportunity and Vulnerability and Incident Asthma Among Children.

Background: The extent to which physical and social attributes of neighborhoods play a role in childhood asthma remains understudied. Objective: To examine associations of neighborhood-level opportunity and social vulnerability measures with childhood asthma incidence. Design, Setting, and Participants: This cohort study used data from children in 46 cohorts participating in the Environmental Influences on Child Health Outcomes (ECHO) Program between January 1, 1995, and August 31, 2022. Participant inclusion required at least 1 geocoded residential address from birth and parent or caregiver report of a physician's diagnosis of asthma. Participants were followed up to the date of asthma diagnosis, date of last visit or loss to follow-up, or age 20 years. Exposures: Census tract-level Child Opportunity Index (COI) and Social Vulnerability Index (SVI) at birth, infancy, or early childhood, grouped into very low (<20th percentile), low (20th to <40th percentile), moderate (40th to <60th percentile), high (60th to <80th percentile), or very high (≥80th percentile) COI or SVI. Main Outcomes and Measures: The main outcome was parent or caregiver report of a physician's diagnosis of childhood asthma (yes or no). Poisson regression models estimated asthma incidence rate ratios (IRRs) associated with COI and SVI scores at each life stage. Results: The study included 10 516 children (median age at follow-up, 9.1 years [IQR, 7.0-11.6 years]; 52.2% male), of whom 20.6% lived in neighborhoods with very high COI and very low SVI. The overall asthma incidence rate was 23.3 cases per 1000 child-years (median age at asthma diagnosis, 6.6 years [IQR, 4.1-9.9 years]). High and very high (vs very low) COI at birth, infancy, or early childhood were associated with lower subsequent asthma incidence independent of sociodemographic characteristics, parental asthma history, and parity. For example, compared with very low COI, the adjusted IRR for asthma was 0.87 (95% CI, 0.75-1.00) for high COI at birth and 0.83 (95% CI, 0.71-0.98) for very high COI at birth. These associations appeared to be attributable to the health and environmental and the social and economic domains of the COI. The SVI during early life was not significantly associated with asthma incidence. For example, compared with a very high SVI, the adjusted IRR for asthma was 0.88 (95% CI, 0.75-1.02) for low SVI at birth and 0.89 (95% CI, 0.76-1.03) for very low SVI at birth. Conclusions: In this cohort study, high and very high neighborhood opportunity during early life compared with very low neighborhood opportunity were associated with lower childhood asthma incidence. These findings suggest the need for future studies examining whether investing in health and environmental or social and economic resources in early life would promote health equity in pediatric asthma.

Linear Classification of Neural Manifolds with Correlated Variability.

Understanding how the statistical and geometric properties of neural activity relate to performance is a key problem in theoretical neuroscience and deep learning. Here, we calculate how correlations between object representations affect the capacity, a measure of linear separability. We show that for spherical object manifolds, introducing correlations between centroids effectively pushes the spheres closer together, while introducing correlations between the axes effectively shrinks their radii, revealing a duality between correlations and geometry with respect to the problem of classification. We then apply our results to accurately estimate the capacity of deep network data.

Adverse Childhood Experiences and Risk Patterns of Alcohol and Cannabis Co-Use: A Longitudinal Study of Puerto Rican Youth.

PURPOSE: Adverse childhood experiences (ACEs) are common in Puerto Rican youths. Few large longitudinal studies of Latine youth examined what predicts co-use of alcohol and cannabis in late adolescence and young adulthood. We investigated the prospective association between ACEs with alcohol/cannabis co-use in Puerto Rican youth. METHODS: Participants from a longitudinal study of Puerto Rican youth (n = 2,004) were included. Using multinomial logistic regressions to test associations between prospectively reported ACEs (11 types, reported by parents and/or children, categorized as 0-1, 2-3, and 4+ ACEs) with young adult alcohol/cannabis use patterns in the past month (i.e., no lifetime use, low-risk [no binge drinking and cannabis use < 10], binge-drinking only, regular cannabis use only, and alcohol/cannabis co-use). Models were adjusted for sociodemographic variables. RESULTS: In this sample, 27.8% reported 4+ ACEs, 28.6% endorsed binge drinking, 4.9% regular cannabis use, and 5.5% alcohol/cannabis co-use. Compared to individuals with no lifetime use, those reporting 4+ (vs. 0-1) ACEs had greater odds of low-risk use (adjusted odds ratio [aOR] 1.60, 95% confidence interval [CI] = 1.04-2.45), regular cannabis use (aOR 3.13 95% CI = 1.44-6.77), and alcohol/cannabis co-use (aOR 3.57, 95% CI = 1.89-6.75). In relation to low-risk use, reporting 4+ ACEs (vs. 0-1) was associated with 1.96 odds (95% CI = 1.01-3.78) of regular cannabis use and 2.24 odds (95% CI = 1.29-3.89) of alcohol/cannabis co-use. DISCUSSION: Exposure to 4+ ACEs was associated with the occurrence of adolescent/young adulthood regular cannabis use and alcohol/cannabis co-use. Importantly, ACEs exposure differentiated young adults who were co-using compared to those engaged in low-risk use. Preventing ACE or interventions for Puerto Rican youth experiencing 4+ ACEs may mitigate negative consequences associated with alcohol/cannabis co-use.

Exploring the factors influencing meaningful engagement of persons living with advanced dementia through the Namaste Care Program: a qualitative descriptive study.

Background: Meaningful engagement has been described as active participation based on a person's interests, preferences, personhood, or perceived value. It has many benefits for persons living with dementia in long-term care (LTC) homes, including improvement in physical and cognitive function, and mental health. People with advanced dementia continue to need and benefit from inclusion and social contact in LTC, yet there is not a well-developed understanding of how to support this. A tailored intervention called Namaste Care has been shown to be an effective approach to meaningfully engage residents in LTC, decrease behavioral symptoms, and improve their comfort and quality of life. There is a need to consider how best to deliver this intervention. Objective: The aim of this study was to describe environmental, social, and sensory factors influencing meaningful engagement of persons with advanced dementia during Namaste Care implementation in LTC. Methods: In this qualitative descriptive study, focus groups and interviews were conducted with families, volunteers, staff, and managers at two LTC homes. Directed content analysis was conducted. The Comprehensive Process Model of Engagement was used as a coding framework. Results: With respect to environmental attributes, participants emphasized that a designated quiet space and a small group format were helpful for engagement. In terms of social attributes, participants emphasized Namaste Care staff capacity to deliver individualized care. Regarding sensorial factors, familiarity with the activities delivered in the program was emphasized. Conclusion: Findings reveal the need to offer small group programs that include adapted recreational and stimulating activities, such as Namaste Care, for residents at the end of life in LTC. Such programs facilitate meaningful engagement for persons with dementia as they focus on individual preferences, comfort, and inclusion while recognizing changing needs and abilities of residents.

Development, religious affiliation, and social context: Substance use disorders in Puerto Rican transitional age youth.

Introduction: Transitional age youth (i. e., ages 16-24; TAY) use higher levels of substances than any age group in the United States. Understanding what factors increase substance use during TAY could suggest novel targets for prevention/intervention. Studies suggest that religious affiliation is inversely associated with substance use disorders (SUDs). However, the association of religious affiliation and SUD, including the role of gender and social context, has not been studied in TAY of Puerto Rican ethnicity. Methods: Using data from N = 2,004 TAY of Puerto Rican ethnicity across two social contexts-Puerto Rico (PR) and the South Bronx, NY (SBx)-we tested the association of religious identity (Catholic, Non-Catholic Christian, Other/Mixed, and no religious affiliation, or "None"), and four SUD outcomes (alcohol use disorder, tobacco use disorder, illicit SUD, and any SUD). Logistic regression models were used to examine the association between religious identity and SUDs, then we tested for interaction by social context and gender. Result: Half the sample identified as female; 30, 44, and 25% were 15-20, 21-24, and 25-29 years of age, respectively; 28% of the sample received public assistance. There was a statistically significant difference between sites for public assistance (22 and 33% in SBx/PR, respectively; p < 0.001); 29% of the sample endorsed None (38 and 21% in SBx/PR, respectively.) Compared to None, identifying as Catholic was associated with reduced risk of illicit SUD (OR = 0.51, p = 0.02), and identifying as Non-Catholic Christian with reduced risk for any SUD (OR = 0.68, p = 0.04). Additionally, in PR but not SBx, being Catholic or Non-Catholic Christian was protective for illicit SUD when compared to None (OR = 0.13 and 0.34, respectively). We found no evidence of an interaction between religious affiliation and gender. Discussion: The percentage of PR TAY who endorse no affiliation is higher than the general PR population, reflective of increasing religious non-affiliation among TAY across cultures. Critically, TAY with no religious affiliation are twice as likely as Catholics to have illicit SUD, and 1.5 times as likely as Non-Catholic Christians to have any SUD. Endorsing no affiliation is more adverse for illicit SUD in PR than the SBx, underscoring the importance of social context.

The impact of the mySupport advance care planning intervention on family caregivers' perceptions of decision-making and care for nursing home residents with dementia: pretest-posttest study in six countries.

BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.

Palliative Approach to Care Education for Multidisciplinary Staff of Long-Term Care Homes: A Pretest Post-Test Study.

This study used a single-group pre-test and post-test design to evaluate an educational workshop for multidisciplinary staff working in long-term care homes on implementing a palliative approach to care and perceptions about advanced care planning conversations. Two outcomes were measured to assess the preliminary efficacy of the educational workshop at baseline and 1-month post-intervention. Knowledge regarding implementing a palliative approach to care was assessed using the End-of-Life Professional Caregivers Survey and changes in staff perception toward ACP conversations were assessed using the Staff Perceptions Survey. Findings suggest that staff experienced an improvement in self-reported knowledge regarding a palliative approach to care (p ≤ .001); and perceptions of knowledge, attitude, and comfort related to advance care planning discussions (p ≤ .027). The results indicate that educational workshops can assist in improving multidisciplinary staff's knowledge about a palliative approach to care and comfort in carrying out advance care planning discussions with residents, family care partners, and among long-term care staff.

No Meta-analytic Evidence for Risks due to Prenatal Magnetic Resonance Imaging in Animal Models.

BACKGROUND: Magnetic resonance imaging (MRI) is a powerful, noninvasive tool for both clinical practice and research. Though the safety of MRI has been endorsed by many professional societies and government bodies, some concerns have remained about potential risk from prenatal MRI. Case-control animal studies of MRI scanning during gestation and effects on offspring are the most direct test available for potential risks. We performed a meta-analysis of extant animal studies of prenatal MRI examining reproductive and offspring outcomes. METHODS: Relevant articles were identified through PubMed search and citation searching of known articles and review papers. Eighteen relevant studies were identified with case-control designs of prenatal scanning conducted in vivo with mammalian species using MRI-relevant field strength. Standardized mean difference effect sizes were analyzed across k = 81 outcomes assessed across 649 unexposed dams, 622 exposed dams, 3024 unexposed offspring, and 3328 exposed offspring using a multilevel meta-analytic approach that clustered effect sizes within publications. RESULTS: The meta-analysis indicated no significant evidence for a deleterious effects of prenatal MRI (standardized mean difference = 0.17, 95% CI [-0.19, 0.54], t80 = 0.94, p = .35) across outcomes. Similarly, no effects were observed when separately examining the 4 most commonly assessed outcomes: birth weight, litter size, fetal viability, and physical malformations (p > .05). CONCLUSIONS: Case-control mammalian animal studies indicate no significant known risks of prenatal MRI to reproductive outcomes or offspring development. This finding is largely mirrored in human research, though the lack of randomized case-control designs limits direct comparison. The current findings provide additional support to the prevailing consensus that prenatal MRI poses no known risk to offspring.