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Olfactory training (OT), or smell training,consists of repeated exposure to odorants over time with the intended neuroplastic effect of improving or remediating olfactory functioning. Declines in olfaction parallel declines in cognition in various pathological conditions and aging. Research suggests a dynamic neural connection exists between olfaction and cognition. Thus, if OT can improve olfaction, could OT also improve cognition and support brain function? To answer this question, we conducted a systematic review of the literature to determine whether there is evidence that OT translates to improved cognition or altered brain morphology and connectivity that supports cognition. Across three databases (MEDLINE, Scopus, & Embase), 18 articles were identified in this systematic review. Overall, the reviewed studies provided emerging evidence that OT is associated with improved global cognition, and in particular, verbal fluency and verbal learning/memory. OT is also associated with increases in the volume/size of olfactory-related brain regions, including the olfactory bulb and hippocampus, and altered functional connectivity. Interestingly, these positive effects were not limited to patients with smell loss (i.e., hyposmia & anosmia) but normosmic (i.e., normal ability to smell) participants benefitted as well. Implications for practice and research are provided.
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Encéfalo , Cognição , Treinamento Olfativo , Humanos , Transtornos do Olfato/terapia , OlfatoRESUMO
Background: Telehealth has seen widespread use since the onset of the COVID-19 pandemic, and 82% patients required assistance in accessing their telehealth appointments. This assistance commonly comes from a family caregiver who may or may not be comfortable using the technologies associated with telehealth. The objective of our study was to analyze a demographically representative survey of U.S. family caregivers to understand the level of comfort using telehealth technologies among family caregivers. Methods: A secondary analysis of survey data collected during the COVID-19 pandemic in 2020. Level of caregiver comfort using computers, smartphones, and tablets was determined through three Likert-style questions. Proportional odds logistic regression was used to understand the associations between demographic variables and level of caregiver comfort using each technology, when adjusting for covariates. Results: A total of 340 caregivers were included in the analysis. Compared with non-Hispanic white caregivers, Asian caregivers had higher odds (odds ratio [OR] 3.14; 95% confidence interval [CI] 1.36, 8.02; p = 0.01) of expressing comfort using computers; black caregivers (OR 0.46; 95% CI 0.21, 0.98; p = 0.04) and Hispanic caregivers (OR 0.36; 95% CI 0.17, 0.79; p = 0.01) expressed lower odds of comfort using smartphones; and Asian caregivers had higher odds (OR 4.64; 95% CI 2.05, 11.69; p = 0.001) of expressing comfort using tablets. Conclusion and Implications: There are identified disparities in the level of technological comfort using computers, smartphones, and tablets by different racial and ethnic groups. Health systems should consider early stakeholder involvement in the design of telehealth technologies, culturally responsive training materials on telehealth technology use to reduce disparities in comfort using telehealth technologies.
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COVID-19 , Telemedicina , Humanos , Etnicidade , Cuidadores , Estudos Transversais , Pandemias , COVID-19/epidemiologiaRESUMO
Emerging evidence suggests that women living with HIV (WLWH) may experience higher rates of anxiety than men living with HIV and women living without HIV. To date, relatively little knowledge exists on valid anxiety screening and diagnostic tools and how they are used among WLWH, specifically WLWH of reproductive age. Thus, the purpose of this scoping review was to describe what is known in the published literature about anxiety among WLWH and the tools used to measure and screen for anxiety in clinical and research contexts. The Arksey and O'Malley methodological framework was used to guide a scoping review of published articles in PsycINFO, Scopus, Sociological Abstracts, and PubMed databases. Twenty-one measures of anxiety were used across the 52 articles identified in the search. Most measures used were self-report. Inconsistencies in standardized screening tools and cutoff scores were observed across studies. Further, measures to assess anxiety varied among studies focused on WLWH. Based on the results from this review, there is a need for consistent, valid measures of anxiety to advance research and clinical practice to support the well-being of WLWH.
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Infecções por HIV , Masculino , Humanos , Feminino , Infecções por HIV/complicações , Infecções por HIV/epidemiologia , Reprodução , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Transtornos de Ansiedade/diagnóstico , Transtornos de Ansiedade/epidemiologia , AutorrelatoRESUMO
BACKGROUND: We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision-making. METHODS: Family caregiver-reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021-7/2021). Four select-all-that-apply caregiver roles were explored: (1) observer (patient as primary decision-maker); (2) primary decision-maker; (3) shared decision-maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ2 and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. RESULTS: Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision-making role, 53.9% a shared decision-making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = -0.581, Wald = 10.69, p < .01). CONCLUSIONS: Most caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. PATIENT OR PUBLIC CONTRIBUTION: The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision-making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.
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Cuidadores , Neoplasias , Humanos , Tomada de Decisões , Qualidade de Vida , Família , Neoplasias/terapiaRESUMO
Objectives: This study aimed to examine the relationships between daily stress, social support, and the mental health of dementia family caregivers.Methods: A national sample of family caregivers (N = 165) completed daily diary surveys over 21 days (n = 2,841). Mixed-level models were used to examine the daily odds of experiencing depression and anxiety-related symptoms when risk factors, such as the stress of managing behavioral symptoms of dementia (BSDs) exhibited by the person living with dementia, and protective factors, such as social support, were reported on a given day.Results: Dementia caregivers were more likely to report depression and anxiety-related symptoms when BSDs were present and perceived as more bothersome than usual. Specific BSDs, including restless behaviors and intense emotions, were also found to increase the daily odds of experiencing depression and anxiety symptoms. The daily odds of depression symptoms decreased on days when caregivers reported receiving instrumental support, while the daily odds of anxiety symptoms increased on days when caregivers reported receiving emotional support.Conclusions: The daily odds of experiencing depression and anxietyvary based on the presence of specific BSDs and social support. These findings support the need for targeted interventions to improve the day-to-day well-being of dementia family caregivers.
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Resilience has been identified as a key concept for dementia family caregiver mental health; however, the concept is not well defined. A concept analysis examining dementia caregiver resilience was conducted using Rodger's Evolutionary Method. The aim of this concept analysis was to describe the historical perspective, attributes, antecedents, and consequences of resilience as it relates to dementia caregiver mental health. Key attributes of dementia caregiver resilience were acceptance, coping strategies, social support, self-appraisal, and spirituality. The results from this concept analysis provide the foundation for the development of resilience-based interventions to support the well-being of dementia family caregivers.
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Cuidadores , Demência , Humanos , Cuidadores/psicologia , Saúde Mental , Demência/psicologia , Adaptação Psicológica , Estresse Psicológico/psicologiaRESUMO
OBJECTIVES: We examined whether adult stress reactivity accounts for the relationship between early life adversity (ELA) and psychological, physical, and cognitive outcomes. METHODS: We examined the relationship between ELA, stress reactivity, psychological well-being, physical health, and cognitive function in two separate datasets - a cross-sectional community sample of older adults (N = 510) aged 60 and older, and waves I-III of the Midlife in the United States (MIDUS) dataset. Age, sex, and income served as covariates in all analyses. Bootstrapped mediation models were used to assess recent stress as a mediator between ELA and mid- to late-life outcomes. RESULTS: ELA was significantly associated with adult stress, anxiety, depression, health conditions, and object cognitive assessments. Adult stress partially accounted for the relationships between ELA and depression, anxiety, health conditions, and memory problems. CONCLUSION: Our findings demonstrate that ELA may influence increased stress in older age, which confers additional risks for developing depression, anxiety, health problems, and cognitive decline. It is possible that intervening on adult stress may reduce risk for both psychological and physical pathology across the lifespan. Further research is needed to develop targeted interventions for mid and late-life stress to improve overall health as individuals age.
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Experiências Adversas da Infância , Idoso , Ansiedade/epidemiologia , Cognição , Estudos Transversais , Humanos , Pessoa de Meia-Idade , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologia , Estados Unidos/epidemiologiaRESUMO
The current study aimed to identify gender-dependent factors that influence caregiver burden among family caregivers of persons with dementia through secondary data analysis. We used a nationally representative survey of 379 family caregivers of persons with dementia completed in 2014. We examined factors affecting the burden experience of male and female caregivers, guided by the stress process model, using hierarchical regression. The analytic sample included 159 males (42%) and 220 females (58%). For males, age of care recipient, being an adult child, social support, instrumental activities of daily living performed, and caregiving impact on caregivers' health influenced burden. For females, co-residence, social support, caregivers' current health, and caregiving impact on caregivers' health impacted burden. Understanding gender differences related to caregiving burden is beneficial for developing effective targeted interventions that support the caregiving role and improve the quality of life of caregivers. [Journal of Gerontological Nursing, 47(7), 33-42.].
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Cuidadores , Demência , Atividades Cotidianas , Sobrecarga do Cuidador , Feminino , Humanos , Masculino , Qualidade de Vida , Fatores SexuaisRESUMO
Repeated social subjugation in early puberty lowers testosterone levels. We used hamsters to investigate the effects of social subjugation on male sexual behavior and metabolic activity within neural systems controlling social and motivational behaviors. Subjugated animals were exposed daily to aggressive adult males in early puberty for postnatal days 28 to 42, while control animals were placed in empty clean cages. On postnatal day 45, they were tested for male sexual behavior in the presence of receptive female. Alternatively, they were tested for mate choice after placement at the base of a Y-maze containing a sexually receptive female in one tip of the maze and an ovariectomized one on the other. Social subjugation did not affect the capacity to mate with receptive females. Although control animals were fast to approach females and preferred ovariectomized individuals, subjugated animals stayed away from them and showed no preference. Cytochrome oxidase activity was reduced within the preoptic area and ventral tegmental area in subjugated hamsters. In addition, the correlation of metabolic activity of these areas with the bed nucleus of the stria terminalis and anterior parietal cortex changed significantly from positive in controls to negative in subjugated animals. These data show that at mid-puberty, while male hamsters are capable of mating, their appetitive sexual behavior is not fully mature and this aspect of male sexual behavior is responsive to social subjugation. Furthermore, metabolic activity and coordination of activity in brain areas related to sexual behavior and motivation were altered by social subjugation.
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Comportamento Apetitivo , Sistema Nervoso/metabolismo , Comportamento Sexual Animal , Meio Social , Estresse Psicológico/psicologia , Animais , Doença Crônica , Comportamento Consumatório , Cricetinae , Complexo IV da Cadeia de Transporte de Elétrons/metabolismo , Feminino , Masculino , Mesocricetus , Ovariectomia , Estresse Psicológico/fisiopatologiaRESUMO
BACKGROUND AND OBJECTIVES: This study examined day-to-day variation in care-resistant behaviors (CRBs) exhibited by persons living with dementia during mouth health care and the potential influence of time-of-day on CRB trajectories. RESEARCH DESIGN AND METHODS: A secondary analysis was conducted on a sample of 75 nursing home-dwelling persons living with dementia who exhibited CRBs during mouth care activities. Over 21 days, CRBs were measured using the revised Resistiveness to Care Scale (RTC-r) during morning and afternoon mouth care sessions. Group-based Trajectory Modeling was used to identify trajectory patterns and assess differences between morning and afternoon CRB patterns. RESULTS: Three trajectory patterns were identified: morning CRB trajectory patterns showed 50.6% of persons living with dementia had consistently low RTC-r scores, 37.5% of persons living with dementia exhibited fluctuating, moderate RTC-r scores, and 11.9% exhibited RTC-r scores that started high and then decreased over time. Similarly, CRB trajectory patterns during afternoon mouth care showed a consistently low RTC-r score for 54.5% and a fluctuating moderate RTC-r score for 38.6% of persons living with dementia. However, the third CRB trajectory group followed a high-increasing trajectory, with RTC-r scores starting high and continuing to increase for 6.9% of persons living with dementia. DISCUSSION AND IMPLICATIONS: CRBs are dynamic and vary within days and over time; however, the time of the day is often not considered in interventions to manage CRBs. Thus, it is important to consider the timing of providing mouth care for persons living with dementia. Based on the characteristics of the trajectories, we suggest that morning mouth activities may be more efficient.
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BACKGROUND: The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers. OBJECTIVE: The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for "Nuestros Días" (Spanish for "our days"), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers. METHODS: The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables. RESULTS: Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros Días study, 78.9% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal. CONCLUSIONS: Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/55216.
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Cuidadores , Demência , Hispânico ou Latino , Humanos , Hispânico ou Latino/psicologia , Cuidadores/psicologia , Estudos de Coortes , Demência/psicologia , Demência/etnologia , Feminino , Masculino , Estresse Psicológico/psicologia , Pessoa de Meia-Idade , Idoso , Estados Unidos/epidemiologia , Adulto , Diários como AssuntoRESUMO
BACKGROUND: Relapse prevention for those with substance use disorder (SUD) is an evolving practice. Initiatives focused on relapse prevention from other populations may provide the foundation for future considerations and recommendations for recovering anesthesia providers in the workplace. The purpose of this scoping review was to examine what is known about return-to-use prediction and prevention strategies in various populations struggling with SUDs to inform future considerations and implications for recovering anesthesia providers with a history of SUD. METHODS: The Arksey and O'Malley framework was used to conduct a scoping review of the literature. A systematic search was conducted across three databases (PubMed, CINAHL, and PsycInfo) for relevant literature. Search terms used were "measures predicting relapse in substance use disorder" and "relapse prevention in substance use disorder AND anesthesia." Data from articles that met the eligibility criteria were extracted and summarized by the primary author. RESULTS: The search identified 46 articles highlighting various relapse prediction and prevention strategies related to craving and stress, underlying biological factors, neuroimaging, and mindfulness. Relapse prediction and prevention strategies ranged from cell phone applications, monitoring biological markers, and functional neuroimaging of the brain. CONCLUSIONS: Relapse is a concern for individuals with a history of SUD. For anesthesia providers, immediate access to powerful anesthesia medications requires return-to-use prediction and prevention strategies when anesthesia providers return to work after SUD treatment. Although some identified strategies are practical, more research is needed to predict and prevent return to use for recovering anesthesia providers.
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Atenção Plena , Transtornos Relacionados ao Uso de Substâncias , Humanos , Prevenção Secundária/métodos , Transtornos Relacionados ao Uso de Substâncias/prevenção & controle , Atenção Plena/métodos , Fissura , RecidivaRESUMO
Background: Family caregivers are often inexperienced and require information from clinic visits to effectively provide care for patients. Despite reported deficiencies, 68% of health systems facilitate sharing information with family caregivers through the patient portal. The patient portal is especially critical in the context of serious illnesses, like advanced cancer and dementia, where caregiving is intense and informational needs change over the trajectory of disease progression. Objective: The objective of our study was to analyze a large, nationally representative sample of family caregivers from the National Study of Caregiving (NSOC) to determine individual characteristics and demographic factors associated with patient portal use among family caregivers of persons living with dementia and those living with cancer. Methods: We conducted a secondary data analysis using data from the 2020 NSOC sample of family caregivers linked to National Health and Aging Trends Study. Weighted regression analysis by condition (ie, dementia or cancer) was used to examine associations between family caregiver use of the patient portal and demographic variables, including age, race or ethnicity, gender, employment status, caregiver health, education, and religiosity. Results: A total of 462 participants (representing 4,589,844 weighted responses) were included in our analysis. In the fully adjusted regression model for caregivers of persons living with dementia, Hispanic ethnicity was associated with higher odds of patient portal use (OR: 2.81, 95% CI 1.05-7.57; P=.04), whereas qualification lower than a college degree was associated with lower odds of patient portal use by family caregiver (OR 0.36, 95% CI 0.18-0.71; P<.001. In the fully adjusted regression model for caregivers of persons living with cancer, no variables were found to be statistically significantly associated with patient portal use at the .05 level. Conclusions: In our analysis of NSOC survey data, we found differences between how dementia and cancer caregivers access the patient portal. As the patient portal is a common method of connecting caregivers with information from clinic visits, future research should focus on understanding how the portal is used by the groups we have identified, and why.
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Demência , Neoplasias , Portais do Paciente , Humanos , Cuidadores , Demência/epidemiologia , Análise de Regressão , Neoplasias/terapiaRESUMO
BACKGROUND: Family caregivers play an increasing role in cancer treatment decision-making. We examined bias reported by family caregivers in the support they and their patient received from their healthcare team when making these decisions, including associations with distress. METHODS: Analysis of 2021 national survey data of family caregivers of patients with cancer (N = 2703). Bias experienced in decision support was assessed with the item: "Have you felt that the support you and the person with cancer have received for making cancer-related decisions by your doctor or healthcare team has been negatively affected by any of the following?" Check-all-that-apply response options included: age, race, language, education, political affiliation, body weight, insurance type or lack of insurance, income, religion, sexual orientation, and gender/sex. Chi-square and regression analyses assessed associations between bias and caregiver distress (GAD-2, PHQ-2). RESULTS: Of 2703 caregiver respondents, 47.4% (n = 1281) reported experiencing ≥1 bias(es) when receiving decision support for making cancer-related decisions. Bias was more prevalent among younger caregivers, males, transwomen/men or gender non-conforming caregivers, racial/ethnic minorities, and those providing care over a longer time period. The odds of having high anxiety (GAD-2 scores ≥ 3) were 2.1 times higher for caregivers experiencing one type of bias (adjusted OR, 2.1; 95% CI, 1.6-2.8) and 4.2 times higher for caregivers experiencing ≥2 biases (adjusted OR, 4.2; 95% CI, 3.4-5.3) compared to none. Similar results were found for high depression scores (PHQ-2 scores ≥ 3). CONCLUSIONS: Nearly half of caregivers involved in their care recipients' cancer-related decisions report bias in decision support received from the healthcare team. Experiencing bias was strongly associated with high psychological distress.
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Neoplasias , Médicos , Humanos , Masculino , Feminino , Cuidadores/psicologia , Ansiedade , Viés , Família/psicologia , Neoplasias/terapiaRESUMO
Prioritizing patient values-who/what matters most-is central to palliative care and critical to treatment decision making. Yet which factors are most important to family caregivers in these decisions remains understudied. Using data from a U.S. national survey of cancer caregivers (N = 1661), we examined differences in factors considered very important by caregivers when partnering with patients in cancer treatment decision making by cancer stage and caregiver sociodemographics. Fifteen factors were rated on a 4-point Likert-scale from 'very unimportant' to 'very important.' Descriptive statistics were used to characterize caregiver factors and tabulate proportions of importance for each. Generalized linear mixed effect modeling was used to examine the importance of factors by cancer stage, and chi-square analyses were performed to determine associations between caregiver sociodemographics and the five most commonly endorsed factors: quality of life (69%), physical well-being (68%), length of life (66%), emotional well-being (63%), and opinions/feelings of oncology team (59%). Significant associations (all p's < 0.05) of small magnitude were found between the most endorsed factors and caregiver age, race, gender, and ethnicity, most especially 'opinions/feelings of the oncology team'. Future work is needed to determine the best timing and approach for eliciting and effectively incorporating caregiver values and preferences into shared treatment decision making.
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BACKGROUND: Digital phenotyping may detect changes in health outcomes and potentially lead to proactive measures to mitigate health declines and avoid major medical events. While health-related outcomes have traditionally been acquired through self-report measures, those approaches have numerous limitations, such as recall bias, and social desirability bias. Digital phenotyping may offer a potential solution to these limitations. OBJECTIVES: The purpose of this scoping review was to identify and summarize how passive smartphone data are processed and evaluated analytically, including the relationship between these data and health-related outcomes. METHODS: A search of PubMed, Scopus, Compendex, and HTA databases was conducted for all articles in April 2021 using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Review (PRISMA-ScR) guidelines. RESULTS: A total of 40 articles were included and went through an analysis based on data collection approaches, feature extraction, data analytics, behavioral markers, and health-related outcomes. This review demonstrated a layer of features derived from raw sensor data that can then be integrated to estimate and predict behaviors, emotions, and health-related outcomes. Most studies collected data from a combination of sensors. GPS was the most used digital phenotyping data. Feature types included physical activity, location, mobility, social activity, sleep, and in-phone activity. Studies involved a broad range of the features used: data preprocessing, analysis approaches, analytic techniques, and algorithms tested. 55% of the studies (n = 22) focused on mental health-related outcomes. CONCLUSION: This scoping review catalogued in detail the research to date regarding the approaches to using passive smartphone sensor data to derive behavioral markers to correlate with or predict health-related outcomes. Findings will serve as a central resource for researchers to survey the field of research designs and approaches performed to date and move this emerging domain of research forward towards ultimately providing clinical utility in patient care.
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Algoritmos , Exercício Físico , Humanos , Coleta de Dados , Bases de Dados Factuais , PubMedRESUMO
There is widespread concern that elder abuse and neglect (EAN) incidents increased during the onset of the COVID-19 pandemic due in part to increases in risk factors. Initial reports relying on administrative systems such as adult protective services records produced mixed results regarding whether or not there was a change in EAN incidents. Using data from an ongoing longitudinal study on EAN in dementia family caregiving that started before the pandemic, we assessed the hypothesis that the pandemic is related to a change in probability of EAN and EAN protective factors. Family caregivers to persons with dementia completed two waves of 21 daily diaries, 6-months apart, assessing their daily use of EAN behaviors. The first group (n = 32) completed their first wave before the pandemic and their second wave during the pandemic. The second group (n = 32) completed both waves during the pandemic. For this cohort, the generalized linear mixed logistic model results showed inconsistent associations between the onset of COVID-19 and the probability of a caregiver engaging in elder abuse or neglect behaviors. In terms of protective factors, the use of formal services was not significantly impacted by COVID-19; however, the likelihood of receiving informal support from family and friends increased significantly during the pandemic period. Dementia family caregivers were not likely impacted negatively by initial pandemic restrictions, such as shelter-in-place orders, as anticipated. These findings contribute to our understanding of how distal, disruptive processes may influence more proximal caregiver stresses and the likelihood of EAN. Supplementary Information: The online version contains supplementary material available at 10.1007/s10896-022-00392-8.
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ABSTRACT: People with HIV (PWH) are living longer and healthier lives; thanks to combination antiretroviral therapy. As many PWH age, they find themselves providing care to family members and friends, just as their counterparts without HIV. The literature indicates that becoming a caregiver creates conditions that compromise one's cognitive function. Additionally, nearly 45% of all PWH experience HIV-associated neurocognitive disorder and are already vulnerable to cognitive impairment due to HIV, aging, and accompanying health conditions, and lifestyle factors. Given what is known, we assert that caregivers with HIV, especially as they age, are at additional risk for developing cognitive impairments. The purpose of this commentary was to briefly examine the juxtaposition between cognitive vulnerability of caregiving and the cognitive vulnerability of aging with HIV. Potential factors contributing to impaired cognition include stress, lack of social support, stigma, lifestyle, and comorbidities. Implications for clinical practice and research are provided.
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Disfunção Cognitiva , Infecções por HIV , Humanos , Idoso , Cuidadores/psicologia , Infecções por HIV/complicações , Infecções por HIV/tratamento farmacológico , Infecções por HIV/psicologia , Disfunção Cognitiva/epidemiologia , Disfunção Cognitiva/etiologia , Família/psicologia , Fatores de RiscoRESUMO
BACKGROUND: Family caregivers play a vital, yet stressful role in managing the healthcare needs and optimizing the quality of life of patients with advanced cancer, from the time they are newly diagnosed until end of life. While early telehealth palliative care has been found to effectively support family caregivers, little work has focused on historically under-resourced populations, particularly African American and rural-dwelling individuals. To address this need, we developed and are currently testing Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African American and rural-dwelling patients with newly diagnosed advanced cancer. METHODS: This is a 2-site, single-blind, hybrid type I implementation-effectiveness trial of the Cornerstone intervention versus usual care. Cornerstone is a multicomponent intervention based on Pearlin's Stress-Health Process Model where African American and/or rural-dwelling family caregivers of patients with newly diagnosed advanced cancer (target sample size = 294 dyads) are paired with a lay navigator coach and receive a series of six, brief 20-60-min telehealth sessions focused on stress management and coping, caregiving skills, getting help, self-care, and preparing for the future/advance care planning. Subsequent to core sessions, caregivers receive monthly follow-up indefinitely until the patient's death. Caregiver and patient outcomes are collected at baseline and every 12 weeks until the patient's death (primary outcome: caregiver distress at 24 weeks; secondary outcomes: caregiver: quality of life and burden; patient: distress, quality of life, and healthcare utilization). Implementation costs and the intervention cost effectiveness are also being evaluated. DISCUSSION: Should this intervention demonstrate efficacy, it would yield an implementation-ready model of early palliative care support for under-resourced family caregivers. A key design principle that has centrally informed the Cornerstone intervention is that every caregiving situation is unique and each caregiver faces distinct challenges that cannot be addressed using a one-size-fits all approach. Hence, Cornerstone employs culturally savvy lay navigator coaches who are trained to establish a strong, therapeutic alliance with participants and tailor their coaching to a diverse range of individual circumstances. TRIAL REGISTRATION: ClinicalTrials.gov NCT04318886 . Registered on 20 March, 2020.