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Introdução: A terminalidade é uma situação cada vez mais vivenciada nos serviços de saúde em razão da progressão da expectativa de vida da população e, consequentemente, do incremento de pacientes com doenças crônicas graves. No Brasil, os serviços de cuidados paliativos ainda se encontram centralizados nos serviços de atenção terciária. Entretanto, em diversos países, a Atenção Primária à Saúde tem sido a grande prestadora e coordenadora de cuidados paliativos dos usuários, em prol da descentralização dessa assistência e da promoção do cuidado integral. Objetivo: Realizar uma revisão narrativa da literatura, a fim de identificar a relação dos médicos de família e comunidade na atuação de cuidados paliativos na Atenção Primária à Saúde. Métodos: Revisão bibliográfica por meio do acesso às bases de dados: Portal da Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS), Scientific Electronic Library Online (SciELO) e PubMed. Foram selecionados 16 artigos, os quais foram submetidos a análise temática e posterior discussão das principais características que colaboram para a maior atuação dos médicos de família e comunidade em cuidados paliativos. Resultados: Observou-se a importância da atuação dos médicos de família e comunidade em cuidados paliativos no âmbito da Atenção Primária à Saúde, bem como a interligação entre as duas especialidades, os desafios existentes nesse caminho e os benefícios dessa prática. Conclusões: A oferta de cuidados paliativos pelos médicos de família e comunidade na atenção primária favorece o acesso e acompanhamento dos pacientes. Entretanto, a atuação dos profissionais das Equipes de Saúde da Família nessa linha de cuidado ainda é insuficiente em razão da escassa capacitação na área.
Introduction: Terminality is a situation increasingly experienced in healthcare services due to the progression of the population's life expectancy and, consequently, the increase in patients with serious chronic diseases. In Brazil, Palliative Care services are still centralized in tertiary care services. However, in many countries, Primary Health Care has been the major provider and coordinator of Palliative Care for users, in favor of decentralizing this assistance and promoting comprehensive care. Objective: To carry out a narrative literature review to identify the relationship of Family Practice Doctors in the performance of Palliative Care in Primary Health Care. Methods: Bibliographic review through access to databases: CAPES, LILACS, SciELO, and PUBMED. Sixteen articles were selected, which were submitted to thematic analysis and subsequent discussion of the main characteristics that contribute to the greater performance of Family Practice Doctors in Palliative Care. Results: The importance of Family Practice Doctors in Palliative Care within the scope of Primary Health Care was observed, as well as the interconnection between the two specialties, the challenges along this path, and the benefits of this practice. Conclusions: The offer of Palliative Care by Family Practice Physicians in Primary Care favors the access and monitoring of patients. However, the performance of the professionals in Family Health Teams in this line of care is still insufficient due to the lack of training in the area.
Introducción: La terminalidad es una situación cada vez más experimentada en los servicios de salud debido a la progresión de la esperanza de vida de la población y, en consecuencia, al aumento de pacientes con enfermedades crónicas graves. En Brasil, los servicios de Cuidados Paliativos todavía están centralizados en los servicios de atención terciaria. Sin embargo, en varios países, la Atención Primaria de Salud ha sido la principal proveedora y coordinadora de los Cuidados Paliativos para los usuarios, a favor de descentralizar esta asistencia y promover la atención integral. Objetivo: Realizar una revisión narrativa de la literatura, con el fin de identificar la relación de los Médicos de Familia y Comunitarios en la actuación de los Cuidados Paliativos en la Atención Primaria de Salud. Métodos: Revisión bibliográfica mediante acceso a bases de datos: Portal CAPES, LILACS, SciELO y PubMed. Fueron seleccionados dieciséis artículos, que fueron sometidos al análisis temático y posterior discusión de las principales características que contribuyen para una mayor actuación de los Médicos de Familia y Comunidad en Cuidados Paliativos. Resultados: Se constató la importancia del trabajo de los Médicos de Familia y Comunitarios en Cuidados Paliativos en el ámbito de la Atención Primaria de Salud, así como la interconexión entre las dos especialidades, los desafíos que existen en este camino y los beneficios de esta práctica. Conclusiones: La oferta de Cuidados Paliativos por Médicos de Familia y Comunitario en Atención Primaria favorece el acceso y seguimiento de los pacientes. Sin embargo, la actuación de los profesionales de los Equipos de Salud de la Familia en esta línea de atención aún es insuficiente debido a la falta de formación en el área.
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Cuidados Paliativos , Atenção Primária à Saúde , Medicina de Família e Comunidade , Estratégias de Saúde NacionaisRESUMO
Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.
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Background: There is a lack of specific studies on the management of infections in patients receiving palliative care (PC) in the final stages of life and during the active process of death, related to specific nursing care. There is clinical and social importance as patients in PC represent a vulnerable population, and adequate management of infections is crucial to improve quality of life and the experience of comfort. Objective: This study analyzed how infections are managed in patients undergoing PC at the end-of-life and in the active process of death in two hospital health services. Design: This is an observational, analytical, and retrospective study. Settings: Data collection took place in two hospitals that assist individuals who are hospitalized under PC, located in Brazil, in a city in the interior of the state of São Paulo. Measurements and Results: The sample consisted of 113 medical records, in which the oncological diagnosis was the most prevalent. There was a predominance of infection diagnoses based on the patient's clinical symptoms, the main focus being the pulmonary, in individuals at the end-of-life. The management of infection in the study sample occurred through care and procedures that generate physical discomfort, however aiming at relieving symptoms. Such findings must be documented, as they invite us to reflect on our practical attitudes and what it means to be comfortable for these people, making it possible to incorporate this information into the design of interventions focused on enhancing the experience of comfort.
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BACKGROUND: A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. METHOD: Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. RESULTS: A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. CONCLUSION: The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.
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Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/tendências , Colômbia , Pesquisa/tendências , Prioridades em Saúde/tendênciasRESUMO
Context: COVID-19 induces complex distress across physical, psychological, and social realms and palliative care (PC) has the potential to mitigate this suffering significantly. Objectives: To describe the clinical characteristics and outcomes of COVID-19 patients with an indication of PC, compared to patients who had no indication, in different pandemic waves. Methods: This retrospective multicenter observational cohort included patients from 40 hospitals, admitted from March 2020 to August 2022. Patients who had an indication of palliative care (PC) described in their medical records were included in the palliative care group (PCG), while those who had no such indication in their medical records were allocated to the non-palliative care group (NPCG). Results: Out of 21,158 patients, only 6.7% had indication for PC registered in their medical records. The PCG was older, had a higher frequency of comorbidities, exhibited higher frailty, and had a higher prevalence of clinical complications and mortality (81.4% vs. 17.7%, p < 0.001), when compared to the NPCG. Regarding artificial life support, the PCG had a higher frequency of dialysis (20.4% vs. 10.1%, p < 0.001), invasive mechanical ventilation (48.2% vs. 26.0%, p < 0.001) and admission to the intensive care unit (53.6% vs. 35.4%, p < 0.001). These differences were consistent across all three waves. Conclusion: A low proportion of patients received PC. Patients in PCG were more fragile, had more clinical complications, and had a higher mortality. On the contrary to our expectations, they received more artificial life support in all three waves. Taken together, these findings suggest that decisions regarding PC indication were made too late, within a context of end-of-life and therapeutic failure.
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OBJECTIVES: To identify and map spiritual care interventions to address spiritual needs and alleviate suffering of patients in the context of palliative care. METHODS: A scoping review using the PRISMA ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist was conducted according to the JBI (Joanna Briggs Institute) guidelines. The search was conducted from October 2022 to January 2023 using 9 electronic databases and gray literature. Studies on spiritual care interventions in palliative care were included. Disagreements between the 2 reviewers were resolved by discussion or a third reviewer. RESULTS: A total of 47 studies were included in this review. All selected articles were published between 2003 and 2022. In total, 8 types of spiritual care interventions were identified to assess spiritual needs and/or alleviate suffering: conversations between the patient and a team member, religious practice interventions, therapeutic presence, guided music therapy, multidisciplinary interventions, guided meditation, art therapy, and combined interventions with multiple components such as music, art, integrative therapy, and reflection. SIGNIFICANCE OF RESULTS: Our study identified few spiritual care interventions in palliative care worldwide. Although this review noted a gradual increase in studies, there is a need to improve the reporting quality of spiritual care interventions, so they can be replicated in other contexts. The different interventions identified in this review can be a contribution to palliative care teams as they provide a basis for what is currently being done internationally to alleviate suffering in palliative care and what can be improved. No patient or public contribution was required to design or undertake this methodological research.
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Objective: To evaluate the effectiveness of Virtual Teaching (VT) Programme regarding palliative care on knowledge, self-efficacy and attitude among Nursing Personnel working in selected hospitals of North India. Methods: A quasi-experimental study with non-equivalent control group pre-test-post-test design was conducted on 121 Nursing Personnel, selected by convenient sampling technique. Knowledge, self-efficacy and attitude were assessed using structured knowledge questionnaire, Palliative Care Self-efficacy Scale, and Frommelt Attitudes toward care of dying scale respectively. Nursing personnel in experimental group received Virtual Teaching Programme regarding palliative care whereas those in comparison group received conventional teaching (CT). The study included a pre-test followed by the teaching (virtual/ conventional) on day one. The post-test was conducted on 15th day after the intervention. Results: The results showed that there was a significant difference in mean post-test knowledge (VT group: 17.11 to CT group: 25.05; t=9.25, p<0.001), self-efficacy (VT group: 39.27 to CT group: 43.38; t=6.39, p<0.001) and attitude (VT group: 108.86 to CT group: 133.23; t=9.27, p<0.001) scores between virtual teaching group and conventional teaching group. ANCOVA test revealed statistically significant differences in the mean scores of knowledge [F (1.11) = 86.61, p<0.001], self-efficacy [F (1.11) = 841.75, p<0.001] and attitude [F (1.11) = 82.92, p<0.001] between the groups, with higher means obtained in the CT group. Conclusion: Virtual Teaching programme and Conventional teaching both were effective in enhancing the knowledge, self-efficacy and attitude among Nursing Personnel regarding palliative care with conventional teaching being more effective.
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Diabetes Mellitus Tipo 2 , Conhecimentos, Atitudes e Prática em Saúde , Síndrome Metabólica , Autoeficácia , Humanos , Adulto , Feminino , Masculino , Diabetes Mellitus Tipo 2/psicologia , Diabetes Mellitus Tipo 2/terapia , Inquéritos e Questionários , Síndrome Metabólica/terapia , Síndrome Metabólica/psicologia , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Índia , Pessoa de Meia-Idade , Atitude do Pessoal de Saúde , Estresse Psicológico , Instrução por Computador/métodos , Adulto Jovem , Recursos Humanos de Enfermagem Hospitalar/psicologia , Recursos Humanos de Enfermagem Hospitalar/educaçãoRESUMO
BACKGROUND: The global need for palliative care (PC) is increasing, especially as the population ages. The diagnosis of a life-threatening illness triggers numerous decisions by healthcare professionals (HCPs). How these professionals understand and deal with PC influences the quantity and quality of care provided to patients. This systematic review aimed to compare perceptions of PC among HCPs around the world. METHODS: The databases (MEDLINE/PubMed, Embase, LILACS, and EBSCO) were searched systematically. Articles reporting on the perception of HCPs, published between January 2012 and December 2022, were included. Texts that reported the perceptions of family members and patients were excluded to avoid the risk of bias. Those included were organized by country/region and continent for later analysis. RESULTS: Of the 2,063 articles initially retrieved 32 were included and provided relevant information from four continents (America, Asia, Europe, and Oceania). Most of this was done through interviews and questionnaires. All HCPs consulted in the studies recognized the importance of PC. The perception of these professionals was influenced by cultural factors (such as religion), difficulties perceived in each country/region (such as inadequate knowledge, conceptual confusion, etc.), diseases, and the age range of patients served. The acceptance and preparation of professionals to deal with this topic in their routine also influenced their perceptions of HCPs. The limitation of this research is the lack of eligible studies from Africa and the small number of participants in some studies. CONCLUSIONS: It can be concluded that HCPs' perceptions of PC are similar, regardless of their country of origin.
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Atitude do Pessoal de Saúde , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicologia , Europa (Continente) , Pessoal de Saúde/psicologia , Ásia , Oceania , AméricaRESUMO
BACKGROUND: National palliative care plans depend upon stakeholder engagement to succeed. Assessing the capability, interest, and knowledge of stakeholders is a crucial step in the implementation of public health initiatives, as recommended by the World Health Organisation. However, utilising stakeholder analysis is a strategy underused in public palliative care. OBJECTIVE: To conduct a stakeholder analysis characterising a diverse group of stakeholders involved in implementing a national palliative care plan in three rural regions of an upper-middle-income country. METHODS: A descriptive cross-sectional study design, complemented by a quantitative stakeholder analysis approach, was executed through a survey designed to gauge stakeholders' levels of interest and capability in relation to five fundamental dimensions of public palliative care: provision of services, accessibility of essential medicines, palliative care education, financial support, and palliative care vitality. Stakeholders were categorised as promoters (high-power, high-interest), latent (high-power, low-interest), advocates (low-power, high-interest), and indifferent (low-power and low-interest). Stakeholder self-perceived category and knowledge level were also assessed. RESULTS: Among the 65 surveyed stakeholders, 19 were categorised as promoters, 34 as advocates, 9 as latent, and 3 as indifferent. Stakeholders' self-perception of their category did not align with the results of the quantitative analysis. When evaluated by region and palliative care dimensions the distribution of stakeholders was nonuniform. Palliative care funding was the dimension with the highest number of stakeholders categorised as indifferent, and the lowest percentage of promoters. Stakeholders categorised as promoters consistently reported a low level of knowledge, regardless of the dimension, region, or their level of interest. CONCLUSIONS: Assessing the capability, interest, and knowledge of stakeholders is a crucial step when implementing public health initiatives in palliative care. It allows for a data-driven decision-making process on how to delegate responsibilities, administer financial resources, and establish governance boards that remain engaged and work efficiently.