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Mothers living with HIV are faced with managing their own complex healthcare and wellness needs while caring for their children. Understanding the lived experiences of mothers living with HIV, including grandmothers and mothers with older children - who are less explicitly represented in existing literature, may guide the development of interventions that best support them and their families. This study sought to explore the role of motherhood and related social/structural factors on engagement with HIV care, treatment-seeking behaviour, and overall HIV management among mothers living with HIV in the USA to inform such efforts. Semi-structured interviews were conducted between June and December 2015 with 52 mothers living with HIV, recruited from the Women's Interagency HIV Study (WIHS) sites in four US cities. Five broad themes were identified from the interviews: children as a motivation for optimal HIV management; children as providing logistical support for HIV care and treatment; the importance of social support for mothers; stressors tied to responsibilities of motherhood; and stigma about being a mother living with HIV. Findings underscore the importance of considering the demands of motherhood when developing more effective strategies to support mothers in managing HIV and promoting the overall health and well-being of their families.
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Among 103 reproductive-aged women with HIV in the U.S. South surveyed post-approval of long-acting injectable (LAI) cabotegravir/rilpivirine, nearly two-thirds reported willingness to try LAI antiretroviral therapy (ART). Most expressed preference for LAI over daily oral ART and had minimal concerns over potential LAI-ART use impacting reproductive health.
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INTRODUCTION: The increasing burden of non-communicable diseases, such as hypertension, diabetes and dyslipidaemia, presents key challenges to achieving optimal HIV care outcomes among ageing people living with HIV. These diseases are often comorbid and are exacerbated by psychosocial and structural inequities. This interaction among multiple health conditions and social factors is referred to as a syndemic. In the USA, there are substantial disparities by social position (ie, racial, ethnic and socioeconomic status) in the prevalence and/or control of non-communicable diseases and HIV. Intersecting stigmas, such as racism, classism and homophobia, may drive these health disparities by contributing to healthcare avoidance and by contributing to a psychosocial syndemic (stress, depression, violence victimisation and substance use), reducing success along the HIV and non-communicable disease continua of care. Our hypothesis is that marginalised populations experience disparities in non-communicable disease incidence, prevalence and control, mediated by intersectional stigma and the psychosocial syndemic. METHODS AND ANALYSIS: Collecting data over a 4 year period, we will recruit sexual minority men (planned n=1800) enrolled in the MACS/WIHS Combined Cohort Study, a long-standing mixed-serostatus observational cohort in the USA, to investigate the following specific aims: (1) assess relationships between social position, intersectional stigma and the psychosocial syndemic among middle-aged and ageing sexual minority men, (2) assess relationships between social position and non-communicable disease incidence and prevalence and (3) assess relationships between social position and HIV and non-communicable disease continua of care outcomes, mediated by intersectional stigma and the psychosocial syndemic. Analyses will be conducted using generalised structural equation models using a cross-lagged panel model design. ETHICS AND DISSEMINATION: This protocol is approved as a single-IRB study (Advarra Institutional Review Board: Protocol 00068335). We will disseminate results via peer-reviewed academic journals, scientific conferences, a dedicated website, site community advisory boards and forums hosted at participating sites.
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Infecciones por VIH , Enfermedades no Transmisibles , Estigma Social , Sindémico , Humanos , Infecciones por VIH/epidemiología , Infecciones por VIH/psicología , Masculino , Estados Unidos/epidemiología , Enfermedades no Transmisibles/epidemiología , Adulto , Estudios Observacionales como Asunto , Proyectos de Investigación , Persona de Mediana Edad , Minorías Sexuales y de Género/psicología , Minorías Sexuales y de Género/estadística & datos numéricos , Prevalencia , Disparidades en el Estado de Salud , Disparidades en Atención de SaludRESUMEN
Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.
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Planificación Anticipada de Atención , Consenso , Técnica Delphi , Demencia , Cuidados Paliativos , Humanos , Planificación Anticipada de Atención/organización & administración , Directivas Anticipadas , Demencia/terapia , Europa (Continente) , Política de SaludRESUMEN
OBJECTIVES: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. METHODS: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. RESULTS: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. CONCLUSION: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.
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Cuidadores , Cuidados Paliativos , Humanos , Cuidadores/educación , Cuidados Paliativos/métodos , Atención a la Salud , Preparaciones Farmacéuticas , Encuestas y CuestionariosRESUMEN
OBJECTIVES: Family involvement in the lives of people who have dementia and live in long-term care is important, but family members may face challenges communicating and connecting with their loved one as dementia progresses. A type of therapeutic humor (Laughter Care) delivered by trained specialists aims to engage people with dementia who reside in long-term care through creative play and laughter. This study aimed to explore the perceptions of Laughter Care Specialists (LCSs) regarding families' engagement with the program. METHODS: Semi-structured interviews were conducted with LCSs (n = 8) and analyzed inductively using thematic analysis. RESULTS: Family members were reported to initially have varied degrees of openness toward Laughter Care, but often become more accepting after observing positive engagement with the person with dementia. Family members were perceived to benefit from the program through witnessing the person with dementia enjoy joyous and light interactions, learn new ways of communicating and connecting with the person with dementia, and engage in positive interactions at end of life. SIGNIFICANCE OF RESULTS: Laughter Care may provide family members with novel ways of communicating and connecting with people who have dementia at end of life as well as comfort into bereavement.
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Background: Steatohepatitis is common in persons living with HIV and may be associated with gut microbial translocation (MT). However, few studies have evaluated the gut-liver axis in persons living with HIV. In the Women's Interagency HIV Study, we examined the associations of HIV and circulating biomarkers linked to MT and gut damage using the FibroScan-aspartate aminotransferase (FAST) score, a noninvasive surrogate for steatohepatitis with advanced fibrosis. Methods: Among 883 women with HIV and 354 without HIV, we used multivariable regression to examine the associations of HIV and serum biomarkers linked to MT and gut damage (kynurenine and tryptophan ratio, intestinal fatty acid-binding protein, soluble CD14, and soluble CD163) with a log-transformed FAST score after adjusting for key covariates. We used a path analysis and mediation models to determine the mediating effect of each biomarker on the association of HIV with FAST. Results: HIV infection was associated with a 49% higher FAST score. MT biomarker levels were higher in women with HIV than women without HIV (P < .001 for each). MT biomarkers mediated 13% to 32% of the association of HIV and FAST score. Conclusions: Biomarkers linked to MT and gut damage are associated with a higher FAST score and mediate the association of HIV with a higher FAST score. Our findings suggest that MT may be an important mechanism by which HIV increases the risk of steatohepatitis with advanced fibrosis.
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BACKGROUND: The number of older people is increasing worldwide and public expenditure on residential aged care facilities (ACFs) is expected to at least double, and possibly triple, by 2050. Co-ordinated and timely care in residential ACFs that reduces unnecessary hospital transfers may improve residents' health outcomes and increase satisfaction with care among ACF residents, their families and staff. These benefits may outweigh the resources needed to sustain the changes in care delivery and potentially lead to cost savings. Our systematic review comprehensively and systematically presents the available evidence of the effectiveness, safety and cost-effectiveness of alternative models of providing health care to ACF residents. OBJECTIVES: Main objective To assess the effectiveness and safety of alternative models of delivering primary or secondary health care (or both) to older adults living in ACFs. Secondary objective To assess the cost-effectiveness of the alternative models. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, five other databases and two trials registers (WHO ICTRP, ClinicalTrials.gov) on 26 October 2022, together with reference checking, citation searching and contact with study authors to identify additional studies. SELECTION CRITERIA: We included individual and cluster-randomised trials, and cost/cost-effectiveness data collected alongside eligible effectiveness studies. Eligible study participants included older people who reside in an ACF as their place of permanent abode and healthcare professionals delivering or co-ordinating the delivery of healthcare at ACFs. Eligible interventions focused on either ways of delivering primary or secondary health care (or both) or ways of co-ordinating the delivery of this care. Eligible comparators included usual care or another model of care. Primary outcomes were emergency department visits, unplanned hospital admissions and adverse effects (defined as infections, falls and pressure ulcers). Secondary outcomes included adherence to clinical guideline-recommended care, health-related quality of life of residents, mortality, resource use, access to primary or specialist healthcare services, any hospital admissions, length of hospital stay, satisfaction with the health care by residents and their families, work-related satisfaction and work-related stress of ACF staff. DATA COLLECTION AND ANALYSIS: Two review authors independently selected studies for inclusion, extracted data, and assessed risk of bias and certainty of evidence using GRADE. The primary comparison was any alternative model of care versus usual care. MAIN RESULTS: We included 40 randomised trials (21,787 participants; three studies only reported number of beds) in this review. Included trials evaluated alternative models of care aimed at either all residents of the ACF (i.e. no specific health condition; 11 studies), ACF residents with mental health conditions or behavioural problems (12 studies), ACF residents with a specific condition (e.g. residents with pressure ulcers, 13 studies) or residents requiring a specific type of care (e.g. residents after hospital discharge, four studies). Most alternative models of care focused on 'co-ordination of care' (n = 31). Three alternative models of care focused on 'who provides care' and two focused on 'where care is provided' (i.e. care provided within ACF versus outside of ACF). Four models focused on the use of information and communication technology. Usual care, the comparator in all studies, was highly heterogeneous across studies and, in most cases, was poorly reported. Most of the included trials were susceptible to some form of bias; in particular, performance (89%), reporting (66%) and detection (42%) bias. Compared to usual care, alternative models of care may make little or no difference to the proportion of residents with at least one emergency department visit (risk ratio (RR) 1.01, 95% confidence interval (CI) 0.84 to 1.20; 7 trials, 1276 participants; low-certainty evidence), but may reduce the proportion of residents with at least one unplanned hospital admission (RR 0.74, 95% CI 0.56 to 0.99, I2 = 53%; 8 trials, 1263 participants; low-certainty evidence). We are uncertain of the effect of alternative models of care on adverse events (proportion of residents with a fall: RR 1.15, 95% CI 0.83 to 1.60, I² = 74%; 3 trials, 1061 participants; very low-certainty evidence) and adherence to guideline-recommended care (proportion of residents receiving adequate antidepressant medication: RR 5.29, 95% CI 1.08 to 26.00; 1 study, 65 participants) as the certainty of the evidence is very low. Compared to usual care, alternative models of care may have little or no effect on the health-related quality of life of ACF residents (MD -0.016, 95% CI -0.036 to 0.004; I² = 23%; 12 studies, 4016 participants; low-certainty evidence) and probably make little or no difference to the number of deaths in residents of ACFs (RR 1.03, 95% CI 0.92 to 1.16, 24 trials, 3881 participants, moderate-certainty evidence). We did not pool the cost-effectiveness or cost data as the specific costs associated with the various alternative models of care were incomparable, both across models of care as well as across settings. Based on the findings of five economic evaluations (all interventions focused on co-ordination of care), we are uncertain of the cost-effectiveness of alternative models of care compared to usual care as the certainty of the evidence is very low. AUTHORS' CONCLUSIONS: Compared to usual care, alternative models of care may make little or no difference to the number of emergency department visits but may reduce unplanned hospital admissions. We are uncertain of the effect of alternative care models on adverse events (i.e. falls, pressure ulcers, infections) and adherence to guidelines compared to usual care, as the certainty of the evidence is very low. Alternative models of care may have little or no effect on health-related quality of life and probably have no effect on mortality of ACF residents compared to usual care. Importantly, we are uncertain of the cost-effectiveness of alternative models of care due to the limited, disparate data available.
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Hogares para Ancianos , Atención Primaria de Salud , Atención Secundaria de Salud , Anciano , Humanos , Personal de Salud , Calidad de VidaRESUMEN
BACKGROUND: Oral health problems are common, but often overlooked, among people receiving palliative care. AIM: To better understand how oral health can be addressed in this population, this study aimed to explore the perceptions of oral health care among medical practitioners who provide palliative care to inform the development of a palliative oral health care program. DESIGN: A descriptive qualitative design was adopted. SETTING/PARTICIPANTS: A single focus group was conducted with 18 medical practitioners at a palliative care facility in Sydney, Australia. All participants had experience providing palliative care services to clients. The focus group was audio recorded, transcribed and thematically analysed. RESULTS: The results from the inductive thematic analysis identified four themes. The themes highlighted that participants were aware of the oral health needs of people receiving palliative care; however, they also reflected on the complexity in delivering oral health care across the healthcare settings, as well as the challenges around cost, lack of appropriate dental referral pathways, time constraints and limited awareness. Participants also provided recommendations to improve the delivery of oral health care to individuals receiving palliative care. CONCLUSIONS: To improve the provision of oral health care in this population, this study highlighted the need for oral health training across the multidisciplinary team, standardised screening assessments and referrals, a collective responsibility across the board and exploring the potential for teledentistry to support oral health care provision.
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Salud Bucal , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Investigación Cualitativa , Australia , Personal de SaludRESUMEN
Women Living with HIV (WLHIV) who use substances face stigma related to HIV and substance use (SU). The relationship between the intersection of these stigmas and adherence to antiretroviral therapy (ART), as well as the underlying mechanisms, remains poorly understood. This study aimed to examine the association between intersectional HIV and SU stigma and ART adherence, while also exploring the potential role of depression and fear of negative evaluation (FNE) by other people in explaining this association. We analyzed data from 409 WLHIV collected between April 2016 and April 2017, Using Multidimensional Latent Class Item Response Theory analysis. We identified five subgroups (i.e., latent classes [C]) of WLHIV with different combinations of experienced SU and HIV stigma levels: (C1) low HIV and SU stigma; (C2) moderate SU stigma; (C3) higher HIV and lower SU stigma; (C4) moderate HIV and high SU stigma; and (C5) high HIV and moderate SU stigma. Medication adherence differed significantly among these classes. Women in the class with moderate HIV and high SU stigma had lower adherence than other classes. A serial mediation analysis suggested that FNE and depression symptoms are mechanisms that contribute to explaining the differences in ART adherence among WLHIV who experience different combinations of intersectional HIV and SU stigma. We suggest that FNE is a key intervention target to attenuate the effect of intersectional stigma on depression symptoms and ART adherence, and ultimately improve health outcomes among WLHIV.
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Depresión , Miedo , Infecciones por VIH , Cumplimiento de la Medicación , Estigma Social , Trastornos Relacionados con Sustancias , Humanos , Femenino , Infecciones por VIH/psicología , Infecciones por VIH/tratamiento farmacológico , Cumplimiento de la Medicación/psicología , Cumplimiento de la Medicación/estadística & datos numéricos , Adulto , Miedo/psicología , Depresión/psicología , Depresión/epidemiología , Trastornos Relacionados con Sustancias/psicología , Trastornos Relacionados con Sustancias/epidemiología , Persona de Mediana Edad , Análisis de Mediación , Análisis de Clases Latentes , Fármacos Anti-VIH/uso terapéutico , Estudios TransversalesRESUMEN
BACKGROUND: Distributed Medical Education (DME), a decentralized model focused on smaller cities and communities, has been implemented worldwide to bridge the gap in psychiatric education. Faculty engagement in teaching activities such as clinical teaching, supervision, and examinations is a crucial aspect of DME sites. Implementing or expanding DME sites requires careful consideration to identify enablers that contribute to success and barriers that need to be addressed. This study aims to examine enablers, barriers, and factors influencing psychiatrists' willingness to start or continue participating in teaching activities within Dalhousie University's Faculty of Medicine DME sites in two provinces in Atlantic Canada. METHODOLOGY: This cross-sectional study was conducted as part of an environmental scan of Dalhousie Faculty of Medicine's DME programs in Nova Scotia (NS) and New Brunswick (NB), Canada. In February 2023, psychiatrists from seven administrative health zones in these provinces anonymously participated in an online survey. The survey, created with OPINIO, collected data on sociodemographic factors, practice-related characteristics, medical education, and barriers to teaching activities. Five key outcomes were assessed, which included psychiatrists' willingness to engage in (i) clinical training and supervision, (ii) lectures or skills-based teaching, (iii) skills-based examinations, (iv) training and supervision of Canadian-trained psychiatrists, and (v) training and supervision of internationally trained psychiatrists. The study employed various statistical analyses, including descriptive analysis, chi-square tests, and logistic regression, to identify potential predictors associated with each outcome variable. RESULTS: The study involved 60 psychiatrists, primarily male (69%), practicing in NS (53.3%), with international medical education (69%), mainly working in outpatient services (41%). Notably, 60.3% lacked formal medical education training, yet they did not perceive the lack of training as a significant barrier, but lack of protected time as the main one. Despite this, there was a strong willingness to engage in teaching activities, with an average positive response rate of 81.98%. The lack of protected time for teaching/training was a major barrier reported by study participants. Availability to take the Royal College of Physicians and Surgeons of Canada Competency by Design training was the main factor associated with psychiatrists' willingness to participate in the five teaching activities investigated in this study: willingness to participate in clinical training and supervision of psychiatry residents (p = .01); provision of lectures or skills-based teaching for psychiatry residents (p < .01); skills-based examinations of psychiatry residents (p < .001); training/supervision of Canadian-trained psychiatrists (p < .01); and training and supervision of internationally trained psychiatrists (p < .01). CONCLUSION: The study reveals a nuanced picture regarding psychiatrists' engagement in teaching activities at DME sites. Despite a significant association between interest in formal medical education training and willingness to participate in teaching activities, clinicians do not consider the lack of formal training as a barrier. Addressing this complexity requires thoughtful strategies, potentially involving resource allocation, policy modifications, and adjustments to incentive structures by relevant institutions.
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Educación Médica , Psiquiatría , Humanos , Masculino , Psiquiatras , Estudios Transversales , Canadá , Psiquiatría/educación , Encuestas y Cuestionarios , Docentes MédicosRESUMEN
BACKGROUND: Social unacceptability of food access is part of the lived experience of food insecurity but is not assessed as part of the United States Household Food Security Survey Module (HFSSM). OBJECTIVES: The objectives were as follows: 1) to determine the psychometric properties of 2 additional items on social unacceptability in relation to the HFSSM items and 2) to test whether these 2 items provided added predictive accuracy to that of the HFSSM items for mental health outcomes. METHODS: Cross-sectional data used were from the Intersection of Material-Need Insecurities and HIV and Cardiovascular Health substudy of the Multicenter AIDS Cohort Study/Women's Interagency HIV Study Combined Cohort Study. Data on the 10-item HFSSM and 2 new items reflecting social unacceptability were collected between Fall 2020 and Fall 2021 from 1342 participants from 10 United States cities. The 2 social unacceptability items were examined psychometrically in relation to the HFSSM-10 items using models from item response theory. Linear and logistic regression was used to examine prediction of mental health measured by the 20-item Center for Epidemiologic Studies Depression scale and the 10-item Perceived Stress Scale. RESULTS: The social unacceptability items were affirmed throughout the range of severity of food insecurity but with increasing frequency at higher severity of food insecurity. From item response theory models, the subconstructs reflected in the HFSSM-10 and the subconstruct of social unacceptability were distinct, not falling into one dimension. Regression models confirmed that social unacceptability was distinct from the subconstructs reflected in the HFSSM-10. The social unacceptability items as a separate scale explained more (â¼1%) variation in mental health than when combined with the HFSSM-10 items in a single scale, and the social unacceptability subconstruct explained more (â¼1%) variation in mental health not explained by the HFSSM-10. CONCLUSIONS: Two social unacceptability items used as a separate scale along with the HFSSM-10 predicted mental health more accurately than did the HFSSM-10 alone.
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Abastecimiento de Alimentos , Infecciones por VIH , Pruebas Psicológicas , Autoinforme , Humanos , Femenino , Estados Unidos , Estudios de Cohortes , Estudios Transversales , Seguridad AlimentariaRESUMEN
BACKGROUND AND OBJECTIVES: Communication partner training (CPT) is essential in dementia care. Despite families being the largest group of community carers, previous reviews primarily focused on formal carers. This study aimed to understand the characteristics and effectiveness of CPT for families of people with dementia. RESEARCH DESIGN AND METHODS: The systematic review included intervention/protocol studies on dementia CPT for families, excluding formal carers and programs not focused on communication. CINAHL, PsycINFO, SpeechBITE, Medline, SCOPUS, and Embase were searched between November 30 and December 6, 2021. After deduplication, 3,172 records were screened. Quality assessment used JBI Critical Appraisal tools and the Mixed Methods Appraisal Tool. Data synthesis utilized three reporting tools, the International Classification of Functioning, Disability, and Health, and content analysis. RESULTS: Of 30 studies (27 programs), there were 10 quasi-experimental, 5 RCTs, 4 mixed methods, 4 case studies, 4 qualitative, and 2 protocols. Studies were published between 1998 and 2021 and included 671 family members. Characteristics varied with 7/27 programs including consumers during creation and one program including telehealth. One study included all reporting tool criteria. Programs typically used 4 intervention functions, with 12/27 programs addressing 3 behavior change areas. 33/74 outcome measures targeted the "Environment" of the person with dementia. Studies showed positive improvements in communication skills and knowledge, with mixed results on behavior/psychosocial outcomes. Qualitative results identified improvements in conversation and attitudes. DISCUSSION AND IMPLICATIONS: CPT for families improves communication outcomes, however, quality of studies varied significantly. Future research should address gaps in telehealth, consumer involvement, and intervention descriptions.
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Demencia , Humanos , Cuidadores/psicología , Comunicación , Evaluación de Resultado en la Atención de Salud , FamiliaRESUMEN
OBJECTIVE: While modern antiretroviral therapy (ART) is highly effective and safe, depressive symptoms have been associated with certain ART drugs. We examined the association between common ART regimens and depressive symptoms in women with HIV (WWH) with a focus on somatic vs. nonsomatic symptoms. DESIGN: Analysis of longitudinal data from the Women's Interagency HIV Study. METHODS: Participants were classified into three groups based on the frequency of positive depression screening (CES-D ≥16): chronic depression (≥50% of visits since study enrollment), infrequent depression (<50% of visits), and never depressed (no visits). Novel Bayesian machine learning methods building upon a subset-tree kernel approach were developed to estimate the combined effects of ART regimens on depressive symptoms in each group after covariate adjustment. RESULTS: The analysis included 1538 WWH who participated in 12 924 (meanâ=â8.4) visits. The mean age was 49.9âyears, 72% were Black, and 14% Hispanic. In the chronic depression group, combinations including tenofovir alafenamide and cobicistat-boosted elvitegravir and/or darunavir were associated with greater somatic symptoms of depression, whereas those combinations containing tenofovir disoproxil fumarate and efavirenz or rilpivirine were associated with less somatic depressive symptoms. ART was not associated with somatic symptoms in the infrequent depression or never depressed groups. ART regimens were not associated with nonsomatic symptoms in any group. CONCLUSIONS: Specific ART combinations are associated with somatic depressive symptoms in WWH with chronic depression. Future studies should consider specific depressive symptoms domains as well as complete drug combinations when assessing the relationship between ART and depression.
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Fármacos Anti-VIH , Infecciones por VIH , Síntomas sin Explicación Médica , Humanos , Femenino , Persona de Mediana Edad , Infecciones por VIH/complicaciones , Infecciones por VIH/tratamiento farmacológico , Fármacos Anti-VIH/efectos adversos , Depresión , Emtricitabina/uso terapéutico , Teorema de Bayes , Antirretrovirales/uso terapéutico , Combinación de MedicamentosRESUMEN
INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.
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Planificación Anticipada de Atención , Demencia , Cuidado Terminal , Humanos , Consenso , Técnica Delphi , Demencia/terapiaRESUMEN
BACKGROUND: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous medicines. Nurses require education about how to teach informal carers to use these resources. AIM: To evaluate the effectiveness and relevance of an online education programme for registered nurses (RNs) about using the caring@home resources. METHODS: Nurses must complete an online survey prior to the commencement of the online education programme and again upon completion to assess their change in skills, knowledge, confidence and attitudes of the RNs. T-tests were conducted to compare average pre- and post-education scores. FINDINGS: The knowledge, skills and confidence of RNs to teach carers improved significantly following the completion of an education programme. There was a significant change in attitude, meaning that the perceived benefit of teaching informal carers to give subcutaneous medicines improved. All reported they would use the resources in their clinical practice. CONCLUSION: The online education programme is an effective and cost-efficient strategy to educate nurses to support informal carers to help manage breakthrough symptoms using subcutaneous medicines.
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Educación a Distancia , Enfermeras y Enfermeros , Humanos , Cuidadores , Australia , Cuidados PaliativosRESUMEN
BACKGROUND: Distributed medical education (DME) offers manifold benefits, such as increased training capacity, enhanced clinical learning, and enhanced rural physician recruitment. Engaged faculty are pivotal to DME's success, necessitating efforts from the academic department to promote integration into scholarly and research activities. Environmental scanning has been used to gather, analyze, and apply information for strategic planning purposes. It helps organizations identify current practices, assess needs and barriers, and respond to emerging risks and opportunities. There are process models and conceptual frameworks developed for environmental scanning in the business and educational sectors. However, the literature lacks methodological direction on how to go about designing and implementing this strategy to guide research and practice in DME, especially in the psychiatry field. OBJECTIVE: This paper presents a protocol for an environmental scanning that aims to understand current practices and identify needs and barriers that must be addressed to facilitate the integration of psychiatrists from the Dalhousie University Faculty of Medicine's distributed education sites in Nova Scotia and New Brunswick into the Department of Psychiatry, contributing for the expansion of DME in both provinces and informing strategic planning and decision-making within the organization. METHODS: This protocol adopts an innovative approach combining a formal information search and an explanatory design that includes quantitative and qualitative data. About 120 psychiatrists from 8 administrative health zones of both provinces will be invited to complete an anonymous web-based survey with questions about demographics, participants' experience and interest in undergraduate, postgraduate, and continuing medical education, research and scholarly activities, quality improvement, and knowledge translation. Focus group sessions will be conducted with a purposive sample of psychiatrists to collect qualitative data on their perspectives on the expansion of DME. RESULTS: Results are expected within 6 months of data collection and will inform policy options for expanding Dalhousie University's psychiatry residency and fellowship programs using the infrastructure and human resources at distributed learning sites, leveraging opportunities regionally, especially in rural areas. CONCLUSIONS: This paper proposes a comprehensive environmental scan procedure adapted from existing approaches. It does this by collecting important characteristics that affect psychiatrists' desire to be involved with research and scholarly activities, which is crucial for the DME expansion. Furthermore, its concordance with the literature facilitates interpretation and comparison. The protocol's new method also fills DME information gaps, allowing one to identify insights and patterns that may shape psychiatric education. This environmental scan's results will answer essential questions about how training programs could involve therapists outside the academic core and make the most of training experiences in semiurban and rural areas. This could help other psychiatry and medical units outside tertiary care establish residency and fellowship programs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/46835.
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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.
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Cuidados a Largo Plazo , Casas de Salud , Humanos , Motivación , Recolección de Datos , Cuidados Paliativos , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
BACKGROUND: Most people living with a terminal illness and approaching death will need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional, and practical caring supports. A significant portion of these carers can feel overwhelmed, isolated and experience psychological and/or financial distress. Carers can have unmet information needs and information needs can change across the caring period. METHODS: Guided by an Australian National Reference Group, this project undertook a multiphase set of activities to enable the development of an online carer resource. These activities included a literature review of key issues and considerations for family carers supporting someone with a terminal illness, a scoping scan of existing online resources, and interviews and focus groups with eighteen carers to understand their needs and context of caring. This information formed the basis for potential digital content. A web project team was established to create the information architecture and content pathways. User testing survey and usability assessment of the CarerHelp Website was undertaken to assess/optimise functionality prior to release. An evaluation process was also devised. RESULTS: The literature review identified carer needs for practical and psychological support along with better education and strategies to improve communication. The scoping scan of available online resources suggested that while information available to carers is plentiful, much of that which is provided is general, disparately located, inadequately detailed, and disease specific. The eighteen carers who were interviewed highlighted the need for helpful information on: services, symptom management, relationships, preparation for death, managing the emotional and psychological burden that often accompanies caring, and support during bereavement. User testing and usability assessment of the prototype resource led to changes to enhance the user experience and effectiveness of navigation. It also highlighted a lack of awareness of existing resources and the needs of marketing and communication to address this problem. CONCLUSIONS: The project led to the development of an open access online resource, CarerHelp ( www.carerhelp.com.au ), for use by carers and families caring for a person who has palliative care needs. The web metrics demonstrate substantial use of the resources.
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Cuidadores , Interfaz Usuario-Computador , Humanos , Cuidadores/psicología , Australia , Cuidados Paliativos/psicología , Familia/psicología , Apoyo SocialRESUMEN
BACKGROUND: Polypharmacy, using five or more medications, may increase the risk of nonadherence to prescribed treatment. We aimed to identify the interrelationship between trajectories of adherence to antiretroviral therapy (ART) and polypharmacy. METHODS: We included women with HIV (aged ≥ 18) enrolled in the Women's Interagency HIV Study in the United States from 2014 to 2019. We used group-based trajectory modeling (GBTM) to identify trajectories of adherence to ART and polypharmacy and the dual GBTM to identify the interrelationship between adherence and polypharmacy. RESULTS: Overall, 1,538 were eligible (median age of 49 years). GBTM analysis revealed five latent trajectories of adherence with 42% of women grouped in the consistently moderate trajectory. GBTM identified four polypharmacy trajectories with 45% categorized in the consistently low group. CONCLUSIONS: The joint model did not reveal any interrelationship between ART adherence and polypharmacy trajectories. Future research should consider examining the interrelationship between both variables using objective measures of adherence.