The LGBT+ Individual Perspective of Aging in Brazilian Society / A Perspectiva do Indivíduo LGBT+ sobre o Envelhecimento na Sociedade Brasileira

Abstract This study describes the perceptions of aging and the health care received by 101 LGBT+ individuals in Brazil (São Paulo, Mato Grosso, and Rio Grande do Sul). Participants completed an online 13-item demographic and LGBT+ perception questionnaire. The age ranged from 18 to 55 years, 75.5% were Caucasian, 92% self-identified as cisgender and 55% were homosexual. Most did not stop seeking healthcare (59.8%) because of fear, but they avoided revealing their sexuality to health professionals (65.7%). Participants had negative views about aging and regarded the health system as caustic, and health professionals exhibited unethical behaviors and gaps of knowledge related to LGBT+ practice. Continuing education about the LGBT+ community should be prioritized to mediate discriminatory healthcare.

Resumo Este estudo descreve as percepções sobre o envelhecimento e os cuidados de saúde recebidos por 101 indivíduos LGBT+ no Brasil (São Paulo, Mato Grosso e Rio Grande do Sul). Os participantes preencheram um questionário online de 13 itens, dados demográficos e sobre a percepção LGBT+. A idade variou de 18 a 55 anos, sendo 75,5% caucasianos, 92% auto identificados como cisgênero e 55% homossexuais. A maioria não deixou de procurar o serviço de saúde (59,8%) por medo, mas evitou revelar sua sexualidade aos profissionais de saúde (65,7%). Os participantes tinham visões negativas sobre o envelhecimento, consideravam o sistema de saúde não acolhedor e os profissionais de saúde apresentavam comportamentos antiéticos e lacunas de conhecimento relacionadas à prática LGBT+. A educação continuada sobre a comunidade LGBT+ deve ser priorizada para mediar cuidados discriminatórios.

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.

Coping strategies in health professionals facing Covid-19: s systematic review / Estratégias de enfrentamento em profissionais de saúde diante do Covid-19: revisão sistemática / Estrategias de afrontamiento en profesionales de la salud ante Covid-19: revisión sistemática

Given the importance of developing protective actions to mental health in pandemic contexts, this study aimed to gather evidence about coping mechanisms that health professionals use during the Covid-19 pandemic. This systematic review, developed from international and Brazilian databases between November/2019 and July/2020, identified 3821 potentially relevant articles published in English and Portuguese. Checking the articles' appropriateness to the objective of the review resulted in the selection of 23 articles that were read in full, eight of which were selected for this review. The main coping mechanisms described were psychological support from relatives, colleagues, institutions, and patients; availability of continuing education and Personal Protective Equipment (PPE); spirituality; and time for hobbies. Promoting effective and sustainable coping strategies is vital to enable health professionals to feel capable of facing one of the major contemporary humanitarian challenges - the Covid-19 pandemic.

Considerando a importância do desenvolvimento de ações protetivas à saúde mental diante de pandemias, este estudo buscou reunir evidências sobre os mecanismos de enfrentamento empregados por profissionais de saúde em tempos de Covid-19. A revisão sistemática realizada em bases de dados internacionais e brasileiras, entre os meses de novembro/2019 e julho/2020, resultou em 3821 materiais publicados em inglês e português. A verificação da adequação dos materiais ao objetivo proposto derivou na seleção de 23 artigos para a leitura na íntegra, dos quais foram selecionados oito para compor esta revisão. Os principais mecanismos de enfrentamento descritos foram suporte psicológico oriundos de familiares, colegas, instituições, pacientes; disponibilidade de educação continuada e Equipamentos de Proteção Individual (EPIs); espiritualidade; tempo para hobbies. Promover estratégias de enfrentamento eficazes e sustentáveis é vital para que os profissionais da saúde possam se sentir capazes de enfrentar um dos maiores desafios humanitários contemporâneos - a pandemia do Covid-19.

Considerando la importancia de desarrollar acciones de protección a la salud mental ante a pandemia, este estudio buscó recopilar evidencia sobre los mecanismos de afrontamiento empleados por los profesionales de la salud en tiempos de Covid-19. La revisión sistemática desarrollada en bases de datos internacionales y brasileñas, entre los meses de noviembre/2019 y julio/2020, resultó en 3821 materiales publicados en inglés y portugués. La verificación de la adecuación de los materiales al objetivo propuesto llevó a la selección de 23 artículos para la lectura completa, de los cuales ocho fueron seleccionados para esta revisión. Los principales mecanismos de afrontamiento descritos fueron soporte psicológico, oriundos de familiares, colegas, instituciones, pacientes; disponibilidad de educación continuada y Equipo de Protección Personal (EPP); espiritualidad; tiempo para hobbies. Promover estrategias de afrontamiento eficaces y sustentables es vital para que los profesionales de salud puedan sentirse capaces de enfrentar un de los mayores retos humanitarios contemporáneos - la pandemia de Covid-19.

A pilot evaluation of the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) program.

BACKGROUND: Despite increased annual mortality in long-term care (LTC) homes, research has shown that care of dying residents and their families is currently suboptimal in these settings. The purpose of this study was to evaluate resident and family outcomes associated with the Strengthening a Palliative Approach in LTC (SPA-LTC) program, developed to help encourage meaningful end of life discussions and planning. METHODS: The study employs a mixed method design in four LTC homes across Southern Ontario. Data were collected from residents and families of the LTC homes through chart reviews, interviews, and focus groups. Interviews with family who attended a Palliative Care Conference included both closed-ended and open-ended questions. RESULTS: In total, 39 residents/families agreed to participate in the study. Positive intervention outcomes included a reduction in the proportion of emergency department use at end of life and hospital deaths for those participating in SPA-LTC, improved support for families, and increased family involvement in the care of residents. For families who attended a Palliative Care Conference, both quantitative and qualitative findings revealed that families benefited from attending them. Residents stated that they appreciated learning about a palliative approach to care and being informed about their current status. CONCLUSIONS: The benefits of SPA-LTC for residents and families justify its continued use within LTC. Study results also suggest that certain enhancements of the program could further promote future integration of best practices within a palliative approach to care within the LTC context. However, the generalizability of these results across LTC homes in different regions and countries is limited given the small sample size.

Palliative Care Models in Long-Term Care: A Scoping Review.

OBJECTIVE: The goal of this scoping review was to identify existing palliative models in long-term care (LTC) homes and differentiate between the key components of each in terms of training/capacity-building strategies; resident, family and staff support; and advance care planning (ACP) and goals-of-care discussions. METHODS: We conducted a scoping review based on established methods to summarize the international literature on palliative models and programs for LTC. We analyzed the data using tabular summaries and content analysis. RESULTS: We extracted data from 46 articles related to palliative programs, training/capacity building, family support, ACP and goals of care. Study results highlighted that three key components are needed in a palliative program in LTC: (1) training and capacity building; (2) support for residents, family and staff; and (3) ACP, goals-of-care discussion and informed consent. CONCLUSION: This scoping review provided important information about key components to be included in a palliative program in LTC. Future work is needed to develop a model that suits the unique characteristics in the Canadian context.

A Stakeholder Analysis of the Strengthening a Palliative Approach in Long-Term Care Model.

OBJECTIVE: The purpose of this study was to conduct a stakeholder analysis of the strengthening a palliative approach to long-term care (SPA-LTC) model and refine it based on feedback from long-term care (LTC) residents and their families, staff, researchers and decision makers. METHODS: We used a mixed-methods design to conduct a stakeholder analysis of the SPA-LTC model that consisted of two sequential components: qualitative focus groups with LTC staff followed by a quantitative survey with key stakeholders. RESULTS: Twenty-one LTC staff provided feedback about the SPA-LTC model after residents relocated to LTC, during advanced illness and at end of life and in the period of grief and bereavement. This feedback helped to guide revisions of the model. According to the survey results, the SPA-LTC model was well received by 35 stakeholders, but its feasibility was questioned. CONCLUSION: The Canadian SPA-LTC model is evidence based and endorsed by LTC staff and stakeholders. Efforts are needed to determine the feasibility of implementing the model to ensure that residents' needs are made a priority while in LTC.

An Analysis of Documents Guiding Palliative Care in Five Canadian Provinces.

ABSTRACTThe purpose of this study was to analyse the consistency and extent of palliative content across high-level guiding documents related to the care of persons residing in Canadian long-term care homes. A systematic search was conducted examining documents at the national level and across five provinces (Alberta, Ontario, Saskatchewan, Manitoba, and Quebec). Twenty-five documents were selected based on inclusion criteria from 273 documents identified in the systematic search. The majority of these documents were created nationally (48%) or in Ontario (28%). Documents varied in palliative topics discussed, and long-term care was discussed minimally. A minimal number of palliative care guiding documents were found. Long-term care specific documents were absent, and all documents lacked consistency on palliative topics. It is imperative that palliative principles are present and consistent in high-level documents in order to improve the quality of life and care for long-term care residents across Canada.

"Who would want to die like that?" Perspectives on dying alone in a long-term care setting.

The discourse of dying alone is negatively weighted and models of a good death identify not dying alone as a key outcome. Understanding why dying alone is viewed negatively and its effects on care is a priority. In separate focus groups with long-term care residents, family caregivers, and staff, we identified evidence for four different perspectives on the importance of presence at the time of death. However, while each individual had their own unique perspective on dying alone, the predominant view expressed across respondent groups was that having human connection near the end of one's life was important.

Meaningful connections in dementia end of life care in long term care homes.

BACKGROUND: Most persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate. However, palliative approaches have not been widely implemented and there is limited understanding of staff and family experiences of dying and bereavement in this context. METHOD: This descriptive qualitative study explored family and staff experiences of end of life and end of life care for persons with dementia in LTC homes. Eighteen focus groups were conducted with 77 staff members and 19 relatives of persons with dementia at four LTC homes in four Canadian provinces. RESULTS: Three themes emerged: knowing the resident, the understanding that they are all human beings, and the long slow decline and death of residents with dementia. DISCUSSION: Intimate knowledge of the person with dementia, obtained through longstanding relationships, was foundational for person-centred end of life care. Health care aides need to be included in end of life care planning to take advantage of their knowledge of residents with dementia. There were unmet bereavement support needs among staff, particularly health care aides. Persons with dementia were affected by death around them and existing rituals for marking deaths in LTC homes may not fit their needs. Staff were uncomfortable answering relatives' questions about end of life. CONCLUSIONS: Longstanding intimate relationships enhanced end of life care but left health care aides with unmet bereavement support needs. Staff in LTC homes should be supported to answer questions about the trajectory of decline of dementia and death. Further research about residents' experiences of deaths of other residents is needed.

Quality of life in young adults who underwent resective surgery for epilepsy in childhood.

PURPOSE: This study investigated quality of life (QOL) in young adults who had undergone epilepsy surgery before the age of 16 years. The contribution to QOL of seizure status in the prior year, sex, number of antiepileptic drugs, and mood were evaluated. METHODS: Sixty-nine young adults who had undergone surgery were subdivided into those who were seizure-free in the past year (n = 38) and those who had seizures (n = 31) in that time. A nonsurgical comparison group of young adults (n = 29) with childhood-onset medically intractable epilepsy was also studied. All groups completed measures of QOL and mood. KEY FINDINGS: After accounting for mood, sex, and number of antiepileptic drugs, the seizure-free group reported better cognitive and physical function and overall QOL, experienced less seizure worry, and had better self-perception. Mood was the most consistently predictive covariate, and was independently predictive of many aspects of QOL. SIGNIFICANCE: Seizure freedom associated with surgery in childhood is associated with improved QOL in certain domains. Findings highlight the importance of mood in determining self-perception of QOL.

Patient-reported outcome of pediatric epilepsy surgery: social inclusion or exclusion as young adults?

PURPOSE: The purpose of this study was to examine the social relationships and participation in educational, vocational, and community life in young adults who had undergone epilepsy surgery during childhood or adolescence. METHODS: This was a retrospective, cross-sectional, case-controlled, and multisite design study. Findings were compared between young adults who had undergone epilepsy surgery and were seizure-free in the previous 12 months (n = 38), those who had undergone epilepsy surgery and were not seizure-free (n = 33), and a group of individuals with epilepsy who had not undergone surgery (n = 31). RESULTS: The surgical seizure-free group had significantly better general social well-being than the other two groups. Specifically, these participants were employed for more months over the past year, were less likely to report that epilepsy had affected their employment, and were more likely to belong to at least one community organization. However, these participants were not any more likely to be involved in a relationship than those in the other two groups. In addition, there were no group differences in the reported number of friends or the frequency of visits with friends, or in what participants described as their principal activity (i.e., student, employed or unemployed). DISCUSSION: There are a number of benefits to social functioning associated with having had epilepsy surgery and being seizure-free in the past year. Further research is recommended to increase our understanding of the mechanisms involved in the social and personal challenges that these individuals face.

A toolkit to facilitate the implementation of clinical practice guidelines in healthcare settings.

In the early stages of development and pilot implementation of the guidelines, it became apparent that organizations were struggling to identify ways to introduce and implement the guidelines. The majority of the pilot sites were providing education sessions to facilitate CPG utilization with little attention to other implementation strategies. Those charged with introducing the CPG into the clinical setting were soon faced with a myriad of implementation challenges for which they needed a solution. It became clear that a planned systematic approach to facilitate implementation of CPGs was needed.