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1.
Palliat Support Care ; 23: e33, 2025 Jan 21.
Artículo en Inglés | MEDLINE | ID: mdl-39834314

RESUMEN

OBJECTIVES: Chronic kidney disease (CKD) is a global health challenge that affects patients' symptom burden and quality of life. Palliative care interventions show promise in addressing the multiple needs of CKD patients, focusing on symptom management, psychosocial support, and advance care planning. This study aimed to evaluate the effectiveness of palliative care interventions in improving symptom management in patients with CKD. METHODS: The study used a quasi-experimental research design with a sample size of 128 participants diagnosed with CKD. Participants were selected based on strict criteria to ensure consistency of palliative care interventions. Non-probability purposive sampling was used to select participants. Data were collected using validated instruments such as the Edmonton Symptom Assessment System, Kidney Disease Quality of Life-Short Form, Palliative Performance Scale, Dialysis Symptom Index and Functional Assessment of Chronic Illness Therapy-Fatigue. These instruments provided robust measures of symptom severity, quality of life, performance status, symptom burden, and fatigue. The intervention consisted of 4 sessions designed to address symptom management, psychosocial support, and advance care planning strategies. RESULTS: Post-intervention, CKD patients showed significant improvements across multiple measures. Pain decreased from 6.2 to 4.8 (p = 0.002, 23% improvement), and fatigue decreased from 7.5 to 6.1 (p = 0.001, 19% reduction). Depression improved from 5.6 to 4.2 (p = 0.001, 25% reduction) and anxiety decreased from 4.9 to 3.8 (p = 0.004, 22% reduction). Physical functioning increased from 65.3 to 72.1 (p = 0.002, 10% improvement), cognitive function from 72.8 to 78.5 (p = 0.003, 8% increase), and emotional well-being from 60.2 to 65.7 (p = 0.004, 9% improvement). Ambulation improved from 75.2 to 81.5 (p = 0.001, 8% increase), activity from 68.7 to 74.3 (p = 0.004, 8% increase), and self-care from 82.4 to 88.1 (p = 0.003, 7% improvement). Nutritional status improved from 79.6 to 85.2 (p = 0.002, 7% increase) and level of consciousness from 70.3 to 75.8 (p = 0.005, 8% increase). Fatigue scores decreased significantly from 53.2 to 48.6 (p = 0.001, 9% decrease), activities of daily living from 50.1 to 45.8 (p = 0.001, 9% decrease), and well-being from 55.6 to 50.2 (p = 0.001, 10% improvement). SIGNIFICANCE OF THE RESULTS: The results highlight the potential of palliative care interventions to improve outcomes and well-being for people with CKD. By addressing their complex needs, these interventions offer valuable lessons for nephrology and palliative care practice, emphasizing holistic approaches to patient care. The findings add to the evidence supporting the integration of palliative care into CKD management, highlighting its value in improving patient outcomes and quality of life.


Asunto(s)
Cuidados Paliativos , Calidad de Vida , Insuficiencia Renal Crónica , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Femenino , Masculino , Egipto , Persona de Mediana Edad , Insuficiencia Renal Crónica/complicaciones , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/psicología , Adulto , Calidad de Vida/psicología , Anciano , Encuestas y Cuestionarios , Manejo de la Enfermedad
2.
Int J Palliat Nurs ; 31(1): 18-28, 2025 Jan 02.
Artículo en Inglés | MEDLINE | ID: mdl-39853183

RESUMEN

BACKGROUND: Art therapy offers a creative outlet for patients in palliative and hospice care to express emotions, manage distress and enhance wellbeing by addressing physical, emotional and spiritual challenges. AIMS: This review evaluates the effectiveness, challenges and outcomes of art therapy in improving the quality of life for patients in palliative and hospice care. METHODS: An integrative review. FINDINGS: The review of 27 studies identified four key themes: (1) the effects of art therapy on the quality of life of patients, (2) intervention and patient outcomes, (3) improved wellbeing through self-expression, and (4) challenges in care delivery. Art therapy significantly reduced emotional distress, including anxiety, depression and psychological fatigue, while alleviating physical symptoms, like pain and exhaustion. It fostered emotional expression, personal growth and coping skills, helping patients manage their conditions more effectively. Participants also reported enhanced self-awareness, stronger interpersonal connection and a greater sense of control over their lives, leading to improved emotional and physical wellbeing. CONCLUSION: Art therapy provides significant benefits by alleviating emotional and physical distress and enhancing wellbeing. Integrating art therapy into palliative and hospice care supports holistic, patient-centered care, though further research is needed to address access barriers and ensure consistent delivery.


Asunto(s)
Arteterapia , Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Calidad de Vida , Humanos , Arteterapia/métodos , Cuidados Paliativos/métodos , Adaptación Psicológica
3.
Palliat Support Care ; 23: e35, 2025 Jan 28.
Artículo en Inglés | MEDLINE | ID: mdl-39871608

RESUMEN

OBJECTIVES: Palliative care, which was formally established in the Global North, is now recognized globally as part of health care. As part of a larger study, we were interested in how decision-makers at a leading hospice in South Africa understood the changing local context and its influence on the delivery of services. We were interested in how the concept of "total pain," as outlined by Saunders, applies in a very unequal and under-resourced society in the shadow of a long, oppressive colonial, and apartheid past. METHODS: We conducted face-to-face semi-structured interviews with 12 staff at St Luke's Combined Hospices in Cape Town, South Africa, and analyzed the data following Braun and Clarke's thematic analysis approach. RESULTS: Four major themes emerged from the data. First, St Luke's has faced the challenge of serving a larger and far more diverse population than it had under apartheid. Second, the organization has undergone a process of rethinking holism and holistic services offered to palliative care patients in this context. Third, diversity and cultural sensitivity are key to how services are offered, and finally, the concept of "total pain" in this context is linked to questions of power and empowerment. SIGNIFICANCE OF RESULTS: This study is small and situated within a particular context, and it is clear that more data are needed. Nevertheless, the study shows that considering the Global South and postcolonial context is important for thinking about total pain and a global system of palliative care which is sensitive to the majority world context.


Asunto(s)
Cuidados Paliativos , Investigación Cualitativa , Humanos , Sudáfrica , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Femenino , Entrevistas como Asunto/métodos , Masculino , Hospitales para Enfermos Terminales/métodos , Adulto , Dolor/psicología , Dolor/etiología , Manejo del Dolor/métodos , Manejo del Dolor/normas , Colonialismo
4.
ScientificWorldJournal ; 2025: 4203906, 2025.
Artículo en Inglés | MEDLINE | ID: mdl-39834752

RESUMEN

Background: Palliative care is recognized for its holistic approach in improving the quality of life for patients and their families, focusing on pain relief, symptom management, and addressing emotional, social, and spiritual needs. However, the field is evolving due to increasing demand for these specialized services, emphasizing the need for the ongoing research into palliative care practices. Research Purpose: Is to investigate the multidomain impact of palliative care on end-of-life patients and evaluate their effectiveness on these domains. Method: A quantitative descriptive design was adopted for conducting the current study. Approval obtained from a designated hospital in Amman, Jordan, and official permission to carry out the study. The study's participants consisted primarily of physicians and nurses who were involved in providing care to terminally ill patients. The research tool employed in this study is a standardized palliative care assessment that was used in Australia, with modifications based on the literature review. The validity and reliability of the adapted tool have been ensured through rigorous testing procedures. Results: Findings indicated that the implementation of standardized practical palliative care exhibited an average level across all domains, specifically, the spiritual domain received the highest mean score (1.80), while the structural domain had the lowest (1.69). There were significant differences in palliative care provision across specialized work sites, with radiotherapy and blood disease sites scoring higher (M = 2.04 and M = 1.87, respectively). Educational levels significantly influenced care perceptions, favoring BSc holders. Age did not significantly affect palliative care provision, probably because of standardized care protocols and sample size. In addition, nurses rated palliative care higher than physicians, likely due to their more direct patient involvement. Conclusion: In light of the results, it is evident that there is a pressing need to consistently evaluate the healthcare services offered to meet the needs of the increasing population of terminally ill patients.


Asunto(s)
Cuidados Paliativos , Calidad de Vida , Cuidado Terminal , Humanos , Cuidados Paliativos/métodos , Masculino , Femenino , Persona de Mediana Edad , Adulto , Jordania , Encuestas y Cuestionarios
5.
Int J Qual Health Care ; 37(1)2025 Jan 09.
Artículo en Inglés | MEDLINE | ID: mdl-39869418

RESUMEN

BACKGROUND: In Taiwan, as the population ages, palliative care services (PCS) have expanded significantly to include comprehensive benefit plans for critically ill individuals, supported by reimbursements from the National Health Insurance program. However, incorporating palliative care into the medical management of these patients presents several challenges. We aim to evaluate the effects of palliative care interventions on medical resources in end-of-life scenarios, to promote earlier palliative care access and provide high-quality healthcare services for patients. METHODS: A total of 2202 patients were included in this study. Primary diagnosis and referral for PCS were assessed using ICD-10 and HNI code. All study subjects were divided into three groups: patients who did not receive PCS (no-PCS), patients who received PCS before their final hospital admission (PCS-before), and patients who received PCS after their final admission (PCS-after). We evaluated (i) the effects of PCS on eight medical resource utilization outcomes within the 30 days preceding death and (ii) the effects of early intervention on two major diseases. RESULTS: Initiating PCS before a patient's last hospital admission was associated with less aggressive medical interventions in the 30 days before death, including reduced length of intensive care unit (ICU) [odds ratio (OR) = 0.25], and rates of endotracheal intubation (OR = 0.12), respiratory ventilator support (OR = 0.20), cardiopulmonary resuscitation (OR = 0.18), and blood transfusion (OR = 0.65). Among patients with cancer and lung diseases, those who received PCS prior to their final hospitalization of over 14 days experienced reduced hospitalization duration (OR = 0.52 and 0.24, respectively). Patients with lung disease also had significantly lower odds of ICU stays (OR = 0.44) and respiratory ventilation (OR = 0.33). CONCLUSION: The timing of palliative care intervention critically impacts on duration of hospitalization and ICU stay and the need for intubation procedures or cardiopulmonary resuscitation. The findings can help the government and medical providers in developing comprehensive palliative care policies and programs to improve care quality and patient rights.


Asunto(s)
Unidades de Cuidados Intensivos , Cuidados Paliativos , Cuidado Terminal , Humanos , Masculino , Femenino , Anciano , Persona de Mediana Edad , Taiwán , Tiempo de Internación/estadística & datos numéricos , Anciano de 80 o más Años , Recursos en Salud/estadística & datos numéricos , Hospitalización/estadística & datos numéricos , Programas Nacionales de Salud , Adulto
6.
BMC Palliat Care ; 24(1): 18, 2025 Jan 18.
Artículo en Inglés | MEDLINE | ID: mdl-39825369

RESUMEN

OBJECTIVES: Palliative care (PC) is an interdisciplinary approach aimed at improving the physical, psychological, and spiritual well-being of patients and families affected by life-threatening diseases. This study aimed to investigate the need for PC among critically ill patients and their quality of life (QOL) in low-income groups in Bangladesh. METHODS: This cross-sectional study was conducted at four healthcare facilities from March to April 2023, involving 553 registered patients with advanced chronic conditions. After applying inclusion and exclusion criteria, 183 patients in the advanced stage of illness were included. We collected data on sociodemographic, comorbidities, disabilities, and the 10-item African Palliative Outcome Scale (APOS). The Supportive and Palliative Care Indicators Tool (SPICT) was used to identify individuals requiring PC. The study investigated patients with an Eastern Cooperative Oncology Group (ECOG) performance status of 3-4, indicating significant functional impairment, and explored QOL across four domains: physical health, psychological health, social relationships, and environmental factors. RESULTS: The mean age of the 183 patients was 53.8 (± 14.53) years, with 69.5% being female. We found that 10.3% of patients with chronic illness required PC, particularly cancer patients (87%) and those with chronic kidney disease (CKD) (53.3%). The APOS scores indicated that family anxiety (48.6%) was the most burdensome issue, followed by severe pain (15.5%), severe worry about illness (22.4%), and feelings of life being unworthy (9.4%). Patients with severe functional limitations (ECOG 3-4) were significantly more likely to need PC (58%) compared to those with moderate or no limitations (ECOG 0-2) (24%). Among those requiring PC, 70.1% rated their QOL as poor or very-poor, while only 23.8% of patients not needing PC reported similar ratings. Female patients had poorer QOL than males across all domains, and those facing financial hardships also experienced significantly lower QOL. CONCLUSION: In Bangladesh's low-income communities, a significant proportion of patients with chronic illnesses require palliative care (PC) due to advanced conditions. The findings emphasize the importance of integrating PC early in the treatment process for cancer and CKD patients, as it can greatly improve their QOL and provide essential support for both patients and families. The results advocate for a holistic approach to PC that addresses physical, psychological, social, and environmental factors affecting patients' QOL.


Asunto(s)
Cuidados Paliativos , Pobreza , Calidad de Vida , Humanos , Femenino , Masculino , Bangladesh , Calidad de Vida/psicología , Persona de Mediana Edad , Estudios Transversales , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Adulto , Enfermedad Crónica/psicología , Enfermedad Crónica/terapia , Anciano , Pobreza/psicología , Pobreza/estadística & datos numéricos , Encuestas y Cuestionarios
7.
Rev. Bras. Med. Fam. Comunidade (Online) ; 19(46): e-3416, 20241804.
Artículo en Inglés, Portugués | LILACS | ID: biblio-1566115

RESUMEN

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.


Asunto(s)
Cuidados Paliativos , Atención Primaria de Salud , Medicina Familiar y Comunitaria , Estrategias de Salud Nacionales
8.
Pneumologie ; 78(12): 1035-1044, 2024 Dec.
Artículo en Alemán | MEDLINE | ID: mdl-39672174

RESUMEN

Palliative medical care for patients with pulmonary diseases has improved significantly in recent years - particularly in the field of pneumooncology and in acute and intensive care medicine. For patients with non-malignant lung diseases, however, palliative care is often provided very late in the course of the disease. Our article is intended to provide incentives and explanations for the contemporary integration of palliative care - regardless of the underlying disease.


Asunto(s)
Cuidados Paliativos , Cuidados Paliativos/métodos , Humanos , Alemania , Prestación Integrada de Atención de Salud , Medicina Paliativa , Neumología , Enfermedades Pulmonares/terapia , Terapia Respiratoria/métodos
9.
Support Care Cancer ; 32(12): 841, 2024 Dec 02.
Artículo en Inglés | MEDLINE | ID: mdl-39621134

RESUMEN

PURPOSE: To clarify the current use of unapproved and unproven cancer treatment (UUCT) among the bereaved families of patients with cancer who died in palliative care units, the financial burden and psychological experiences of the families, and the relationship between patients in palliative care who used UUCT and communication with their physicians'. METHODS: This study was conducted as part of a cross-sectional, anonymous nationwide survey of the bereaved family members of cancer patients who died in palliative care unit in Japan. RESULTS: Questionnaires were sent to 1,039 bereaved family members, and responses were received from 661 (64%). Of these, 558 were included in the study after excluding the 103 who did not complete the questionnaire. A total of 7.3% (41 of 558) of patients received UUCT. Of these, 34% (14 of 41) of patients were informed that the treatment was in the research phase, and 49% (20 of 41) were informed that the efficacy of the treatment was unknown. Regarding expectations for UUCT, 61% (25/41) expected to be cured, and 80% (33/41) expected it to slow disease progression. In multivariate logistic regression analysis, use of complementary and alternative medicine (CAM) was associated with receiving UUCT (p = 0.024), and patients who could discuss CAM with their doctors tended to receive UUCT (p = 0.054). CONCLUSION: Patients in palliative care unit who expect to cure tended to receive UUCT. These results highlight the challenge of telling patients that UUCT is ineffective and informing them of their prognosis and severe medical conditions.


Asunto(s)
Familia , Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/estadística & datos numéricos , Neoplasias/terapia , Neoplasias/psicología , Masculino , Femenino , Estudios Transversales , Persona de Mediana Edad , Anciano , Japón , Encuestas y Cuestionarios , Familia/psicología , Adulto , Anciano de 80 o más Años , Modelos Logísticos , Aflicción , Comunicación , Análisis Multivariante
10.
Hu Li Za Zhi ; 71(6): 102-108, 2024 Dec.
Artículo en Chino | MEDLINE | ID: mdl-39618140

RESUMEN

With cancer now the leading cause of death, the importance of palliative care importance is increasingly evident. However, the focus of current policies is on inpatient and home-based care, which neglects the specialized needs of outpatients and results in many not receiving timely palliative care. Integrating palliative care into outpatient clinics using standardized referral criteria and automated systems will allow for timely patient selection and intervention, early symptom management, and psychological support as well as promote patient autonomy in treatment decision-making. Specialized oncology palliative care nurses play a crucial role in related assessment, care planning, and implementation activities. They help patients and families cope with disease progression and end-of-life care through education and support. Early outpatient palliative care benefits many patients and families, realizing a holistic and comprehensive care model.


Asunto(s)
Cuidados Paliativos , Humanos , Instituciones de Atención Ambulatoria/organización & administración
11.
Rev Assoc Med Bras (1992) ; 70(12): e20241023, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39630732

RESUMEN

OBJECTIVE: The study aimed to evaluate the effects of musical-animated toys and audiobooks on the fear and pain in the tracheostomy care of children in the palliative care clinic. METHODS: The study design was a single-center, single-arm, crossover-controlled study. The sample consisted of 16 children who were 3-6 years old. Musical-animated toys and audiobooks were used to divert the children's attention during tracheostomy care. The children whose control data were collected on the first day were shown musical-animated toys on the second day and listened to an audiobook a week later. The children were video-recorded during the interventions. RESULTS: The children who received musical-animated toy and audiobook interventions during and after tracheostomy care expressed less pain than those in the control group, and their fear levels were less during the care. CONCLUSION: Audiobook and musical-animated toy interventions were effective in reducing children's procedure-related fear and pain during tracheostomy care in the pediatric palliative care clinic.


Asunto(s)
Estudios Cruzados , Miedo , Cuidados Paliativos , Juego e Implementos de Juego , Traqueostomía , Humanos , Niño , Cuidados Paliativos/psicología , Cuidados Paliativos/métodos , Masculino , Femenino , Preescolar , Juego e Implementos de Juego/psicología , Miedo/psicología , Música/psicología , Musicoterapia/métodos , Dolor/psicología , Dimensión del Dolor
12.
BMC Geriatr ; 24(1): 1030, 2024 Dec 21.
Artículo en Inglés | MEDLINE | ID: mdl-39709356

RESUMEN

BACKGROUND: Dementia is a progressive and terminal illness. Symptoms are present for people with dementia across all stages, leading to poor quality of life and considerable carer burden. In acute and community care services, no holistic, person-centred outcome tools are available for nurses and informal caregivers to measure symptoms and needs from the person`s with dementia point of view. We therefore undertook validation (exploring semantic/conceptual equivalence, content validity, and views on clinical utility) for a measure (IPOS-Dem) in the community and acute care setting in Switzerland. METHODS: This was a rigorous, multi-step, cross-sectional, multi-method study conducted with nurses and relatives caring for people with dementia in the community and acute care setting. Multiple components were aligned: 1) forward and backward translation from German to Swiss German to achieve semantic equivalence; 2) focus groups to explore clinical utility and conceptual equivalence; 3) cognitive debriefing to review content validity. An expert review was included at the end of each phase. RESULTS: Six people from the public and 24 nurses/relatives were included. Semantic equivalence was achieved after making 14 changes to the wording of items. Participants judged the IPOS-Dem (CH) as a clinically useful intervention in the domains of appropriateness, accessibility, practicability, and acceptability for the following reasons: (1) it enables support for informal caregivers, (2) it provides an overview of the priorities of care, thus supporting symptom review, (3) it allows nurses with different qualifications to contribute critical observations, thus fostering communication and teamwork, and (4) it increases an awareness of change in symptoms throughout the disease trajectory. In the cognitive debriefing interviews, setting and respondent-dependent differences in the conceptual understanding of item descriptors were observed for 11 of 31 items. CONCLUSION: In this novel work, we demonstrate the newly-translated and culturally-adapted IPOS-Dem (CH) is a relevant and comprehensive measure for persons with mild to severe dementia. It can aid a generalist workforce across settings to assess palliative care-relevant symptoms and concerns.


Asunto(s)
Cuidadores , Cuidados Paliativos , Atención Dirigida al Paciente , Humanos , Cuidadores/psicología , Masculino , Estudios Transversales , Femenino , Cuidados Paliativos/métodos , Anciano , Persona de Mediana Edad , Empoderamiento , Demencia/terapia , Demencia/psicología , Suiza , Enfermeras y Enfermeros/psicología , Adulto , Servicios de Salud Comunitaria/métodos
13.
BMJ Open ; 14(12): e090338, 2024 Dec 15.
Artículo en Inglés | MEDLINE | ID: mdl-39675831

RESUMEN

INTRODUCTION: The global burden of cancer is escalating, with Asia accounting for over half of cancer-related deaths worldwide. As cancer often diminishes patients' quality of life and sense of dignity, dignity-related interventions have gained prominence in palliative care for patients with cancer. However, a more in-depth exploration of the involvement of families, as the fundamental social units in Confucian Asian cultures, and cultural considerations is currently lacking. This scoping review focuses specifically on patients with cancer receiving palliative care and aims to offer a comprehensive synthesis of the existing evidence on family participatory dignity interventions, addressing the need for a holistic understanding of this emerging field to guide future research and clinical practice. METHODS AND ANALYSIS: This scoping review will be meticulously structured according to the five-stage framework established by Arksey and O'Malley, complemented by the scoping review methodology of the Joanna Briggs Institute. Our search will encompass a comprehensive array of databases, including PubMed, Embase, The Cochrane Library, CINAHL, Web of Science, PsycINFO, Scopus, CNKI and Wanfang Data, from their inception up to August 2024, targeting both English and Chinese relevant literature. To ensure a thorough exploration, we will also delve into grey literature via OpenGrey, Google Scholar and citation chaining. This scoping review will include all types of quantitative or mixed methods designs and qualitative studies. We will extract data on study design, sample size, intervention details, outcome measures and any other relevant information. The screening process will be conducted by two independent reviewers, who will meticulously assess the titles and abstracts, followed by a full-text review to select relevant studies. Discrepancies will be resolved through consensus discussions with a third reviewer. Data extraction will be executed using a standardised tool, and the findings will be systematically presented in tabular form with an accompanying narrative to summarise all relevant interventions, their characteristics, outcomes and key findings. ETHICS AND DISSEMINATION: Ethical approval for this scoping review is not required, since the methodology merely involves the collection and review of publicly available literature. Our findings will not only be presented and discussed in a peer-reviewed article but also shared at conferences relevant to the topic. TRIAL REGISTRATION: Our scoping review protocol has been formally registered with the Open Science Framework. Registration details can be accessed at the provided link: https://osf.io/fyhrm/.


Asunto(s)
Familia , Neoplasias , Cuidados Paliativos , Calidad de Vida , Humanos , Cuidados Paliativos/métodos , Neoplasias/terapia , Familia/psicología , Proyectos de Investigación , Personeidad , Literatura de Revisión como Asunto , Respeto
14.
J Prim Health Care ; 16(4): 398-406, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-39704763

RESUMEN

Introduction The provision of palliative care is central to primary health care delivery. In this setting, community pharmacies often act in a medication supply role, yet their broader involvement in supporting people in the last year of life is less well understood. Aim This study aimed to review the literature on community pharmacies supporting adults with palliative care needs in their last year of life, emphasising challenges to optimising their role and improving equity and service accessibility. Methods A five-stage scoping review using a comprehensive literature search was conducted using MEDLINE, EMBASE, CINAHL, Web of Science, Scopus, and grey literature up to 30 April 2024. Eligible articles were charted, descriptively analysed, and mapped to a bicultural and holistic health care model, Te Whare Tapa Wha Older Person's Palliative Care model. Results Twenty-five studies from seven countries were reviewed, revealing that community pharmacies provide a range of services to support people with palliative care needs. The main role of community pharmacies resides in Tinana, the physical health domain of Te Whare Tapa Wha Older Person's Palliative Care model. Challenges experienced by pharmacy staff include communication with palliative care service providers and users, integrating their role into palliative care provision, addressing their educational needs, and managing palliative medication stock. Discussion The role of community pharmacy in providing palliative care is not widely understood. If the challenges identified in these studies can be addressed, there is potential for community pharmacies to offer a more proactive palliative care approach to their communities.


Asunto(s)
Servicios Comunitarios de Farmacia , Cuidados Paliativos , Cuidados Paliativos/organización & administración , Humanos , Servicios Comunitarios de Farmacia/organización & administración , Rol Profesional , Accesibilidad a los Servicios de Salud/organización & administración , Adulto
15.
Support Care Cancer ; 33(1): 47, 2024 Dec 21.
Artículo en Inglés | MEDLINE | ID: mdl-39707040

RESUMEN

OBJECTIVE: The present conflict in Israel has led to a surge in cases of acute stress disorder (ASD). The study examined a training program for integrative medicine (IM) providers working in supportive and palliative care settings, teaching clinical skills for treating ASD. METHODS: A 10-h online training program, designed by supportive care trained IM and mental health professionals was attended by a group of 32 IM providers. The impact of the course was assessed using pre- and post-training questionnaires, which underwent qualitative evaluation. Three open-ended questions addressed expectations from the program, anticipated barriers to combining IM with mental health interventions, and explored willingness for multi-disciplinary collaboration. A conventional content analysis was used, where coding categories are derived directly from the text data. Narratives were analyzed using ATLAS.ti software for systematic coding. RESULTS: Narrative themes identified within the group of 32 trainees included expectations regarding facilitating a multi-disciplinary integrative model of care, enriching the ASD-related clinical "toolbox," increasing the effectiveness of IM treatments, and reducing IM treatment-associated risks. Insights were provided for bridging communication gaps between IM practitioners and mental health providers, supporting the multi-disciplinary collaboration. CONCLUSIONS: ASD-focused training for IM practitioners may increase their level of clinical skills and advance collaboration with mental health providers. Future research examining the feasibility of the integrative model and its implementation in supportive care setting is warranted.


Asunto(s)
Medicina Integrativa , Trastornos de Estrés Traumático Agudo , Humanos , Trastornos de Estrés Traumático Agudo/terapia , Israel , Medicina Integrativa/métodos , Femenino , Encuestas y Cuestionarios , Masculino , Cuidados Paliativos/métodos , Personal de Salud/educación , Personal de Salud/psicología , Adulto , Competencia Clínica , Persona de Mediana Edad
16.
BMC Med Educ ; 24(1): 1282, 2024 Nov 08.
Artículo en Inglés | MEDLINE | ID: mdl-39516861

RESUMEN

BACKGROUND: Competence in palliative medicine is required in clinical practice. Based on a literature review, we developed a two-week elective course in palliative medicine for 5th and 6th year medical students. We wanted to study learning outcomes from the course, especially related to knowledge, confidence, and reflections on the doctor's role in palliative care. METHODS: A multiple-choice questionnaire (MCQ) assessed knowledge in palliative care pre and post course. The Thanatophobia Scale (TS) and the Self-efficacy in Palliative Care Scale (SEPC) measured confidence in communication with patients close to death and in providing palliative care, respectively. Reflection notes were analysed using Systematic Text Condensation, a cross-case thematic analysis. Lave & Wenger's theory about situated learning was used to support interpretations. RESULTS: From 2018 to 2022 we ran four courses for a total of 48 students. Test results improved over the course in all four groups. On average, MCQ scores increased by 22% (range 13-33), TS scores were reduced by 28% (24-32), and SEPC scores increased by 50% (42-64), reflecting increased confidence in dealing with seriously ill and dying patients and their relatives. The participants prepared reflection notes describing their main impressions and take-home messages from the course, focusing specifically on the role of the doctor. They described the doctor's role linked to an overarching task of creating a sense of security for patients and relatives. Through the course, and especially through talking to patients and relatives and being part of the interprofessional team, the participants learned how this sense of security was built by gaining competence in the following domains: 1) Patient-centred communication about the disease, expected trajectory, and needs, establishing common ground and support; 2) Being the medical expert in symptom relief and decision-making, providing guidance and reassurance in difficult situations; 3) Professionalism rooted in a holistic and relational approach; and 4) Being a good team player, aware of their function and limitations. CONCLUSIONS: A two-week student-selected course in palliative medicine improved knowledge and skills and increased confidence in providing palliative care. The comprehensive understanding of the doctor's role obtained in this course may also be relevant to other clinical specialties. TRIAL REGISTRATION: Not applicable (no clinical trial).


Asunto(s)
Curriculum , Educación de Pregrado en Medicina , Medicina Paliativa , Estudiantes de Medicina , Humanos , Medicina Paliativa/educación , Estudiantes de Medicina/psicología , Femenino , Educación de Pregrado en Medicina/métodos , Masculino , Competencia Clínica , Rol del Médico , Relaciones Médico-Paciente , Encuestas y Cuestionarios , Autoeficacia , Adulto , Cuidados Paliativos
17.
Harefuah ; 163(10): 631-635, 2024 Nov.
Artículo en Hebreo | MEDLINE | ID: mdl-39535011

RESUMEN

INTRODUCTION: Rehabilitation is a holistic process that addresses the impairment that causes the disability and tries to restore optimal function. The incidence of cancer has been constantly increasing in recent years and thereby, the damage to the patients' quality of life, as a result of the disease and the oncological treatments. In an attempt to improve this, a unique branch of rehabilitation has been developing in recent years, specializing in improving patients' function throughout the entire disease trajectory, from the day of diagnosis to the most advanced stages. The oncological rehabilitation model adjusts the treatment goals to the stage of the disease. First, pre-habilitative treatment to prevent the expected functional decline around the time of diagnosis. Rehabilitation attempts to restore damaged function during the treatments. As the disease progresses - compensatory mechanisms strive to improve function and provide supportive and palliative treatment for preservation and prevention of complications. The rehabilitation process can lead to a significant improvement in the quality of life of many oncology patients who face long-term consequences of the disease and its treatments. The emerging research indicates the contribution of rehabilitation, throughout all stages of the disease, to the quality of life and in some cases to extending life expectancy. Thanks to the emerging recognition among the two disciplines of care (oncology and physiatry) of the importance of quality of life alongside oncology treatments, it seems that there is a reason for optimism regarding the continued development and establishment of oncology rehabilitation.


Asunto(s)
Neoplasias , Calidad de Vida , Humanos , Neoplasias/rehabilitación , Cuidados Paliativos/métodos , Esperanza de Vida
18.
Semin Oncol Nurs ; 40(6): 151753, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-39550249

RESUMEN

OBJECTIVES: While Home-based palliative care might be the preferred choice of many, there has been little research exploring the experiences of older adults and caregivers in this setting. This systematic review aims to explore and synthesize the experiences of home-dwelling older adults (aged 60 and above) and their caregivers with Home-based palliative care. METHODS: A Systematic Review and Meta-Synthesis of qualitative and mixed-methods studies was conducted and reported in accordance with PRISMA guidelines. A systematic search across nine electronic databases, as well as grey literature, reference lists and citation lists were conducted. Studies were included with the following criteria: older adult palliative patients and/or their informal caregivers with the primary setting of palliative care delivery at home. Quality appraisal was conducted by two researchers independently using the Critical Appraisal Skills Programme Qualitative Research Checklist and Mixed Methods Appraisal Tool. Data analysis was facilitated by Braun and Clark's thematic analysis, and meta-synthesis was underpinned by Sandelowski and Barroso's guidelines. RESULTS: A total of 4,931 records were yielded through the electronic database search. After duplicate removal and screening of titles/abstracts and full-texts, a total of 25 studies were included. Five main themes and 11 sub-themes emerged: 1) Living in a diminishing world due to immobility, 2) Bittersweet caregiving process, 3) Navigating a fragmented healthcare system, 4) Maintaining normalcy amongst disruption, 5) Indispensable aspects of Home-based palliative care needed by families. CONCLUSIONS AND IMPLICATIONS FOR NURSING PRACTICE: This meta-synthesis highlights the fundamental significance of embracing a dyadic approach to fully comprehend the intricate dynamics of Home-based palliative care. By recognising the older adult-caregiver dyad as an interconnected unit, future research, therapeutic interventions, and policy initiatives can integrate this dyadic perspective, resulting in more holistic and inclusive Home-based palliative care programs. REGISTRATION: The protocol was registered on PROSPERO (Registration No. CRD42022376864).


Asunto(s)
Cuidadores , Servicios de Atención de Salud a Domicilio , Cuidados Paliativos , Humanos , Cuidadores/psicología , Anciano , Femenino , Masculino , Investigación Cualitativa , Persona de Mediana Edad , Anciano de 80 o más Años
19.
Z Evid Fortbild Qual Gesundhwes ; 190-191: 53-62, 2024 Dec.
Artículo en Alemán | MEDLINE | ID: mdl-39510949

RESUMEN

INTRODUCTION: Outpatient and inpatient hospice and palliative care services have been significantly expanded in Germany in recent decades and are increasingly being supplemented by day care services. However, the availability of these services varies greatly from region to region. The extent to which the availability of these care structures is matched by a regional need based on local population structures is as yet unknown. METHODS: In four Poisson regression models, the relationship between population indicators from the areas of demographics, employment, income, education and health and the number of offers of outpatient and inpatient hospice work and palliative care is exploratively examined. The cumulated data at district level is drawn from the INKAR database of the Federal Institute for Research on Building, Urban Affairs and Spatial Development on living conditions in Germany and from the guide of the German Association for Palliative Medicine. By means of logistic regression, factors influencing the establishment of day care services will also be identified. RESULTS: The analysis included 401 districts and cities in Germany. The number of inhabitants, settlement density, and the average age of inhabitants are the strongest predictors of the number of palliative care services. In metropolitan regions, both outpatient palliative care services and palliative care units tend to be more frequently available, while the number of outpatient hospice services and inpatient hospices increases in districts with a higher number of inhabitants regardless of settlement density. The regression model was unable to demonstrate a significant influence on the emergence of semi-inpatient care facilities, neither for the population indicators nor for the existing care structures. DISCUSSION: Regional population structures can only partially explain the geographically uneven distribution of hospice and palliative care services in districts and cities in Germany. Despite an increase in hospice and palliative care services, fewer hospice and palliative care structures are available in low population density regions that tend to have a higher share of older inhabitants. CONCLUSION: Future health care planning should give more consideration to other population characteristics than to population size alone in order to improve care in regions with higher care needs that are, for example, due to a higher proportion of older residents. Subsequent studies should investigate which population characteristics can best describe the actual care needs.


Asunto(s)
Accesibilidad a los Servicios de Salud , Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Cuidados Paliativos/estadística & datos numéricos , Cuidados Paliativos/organización & administración , Alemania , Humanos , Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Cuidados Paliativos al Final de la Vida/organización & administración , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/organización & administración , Disparidades en Atención de Salud/estadística & datos numéricos , Factores Socioeconómicos , Programas Nacionales de Salud/estadística & datos numéricos , Programas Nacionales de Salud/organización & administración , Centros de Día/estadística & datos numéricos , Centros de Día/organización & administración , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Anciano , Distribución de Poisson
20.
Crit Care Nurs Clin North Am ; 36(4): 597-608, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-39490079

RESUMEN

Palliative care has evolved from its religious and historical roots to a specialized medical discipline, emphasizing quality of life for patients with serious illnesses. The foundational work of pioneers in palliative care has shaped modern practices in symptom management, emotional support, and holistic care. Despite challenges in integrating palliative care in critical care settings and overcoming barriers such as limited provider availability, enhancing training and broadening the application of palliative principles remain essential. Palliative care is crucial, not just for end-of-life scenarios, but for managing severe illness at any stage, ensuring compassionate, patient-centered care.


Asunto(s)
Manejo del Dolor , Cuidados Paliativos , Humanos , Comodidad del Paciente , Enfermería de Cuidados Críticos , Cuidados Críticos , Atención Dirigida al Paciente , Calidad de Vida
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