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1.
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
2.
Nursing (Ed. bras., Impr.) ; 28(312): 9359-9365, jun.2024. tab.
Artículo en Inglés, Portugués | LILACS, BDENF | ID: biblio-1563267

RESUMEN

Os cuidados paliativos visam melhorar a qualidade de vida de pacientes e suas famílias que enfrentam doenças ameaçadoras, proporcionando alívio ao sofrimento físico, psicossocial e espiritual. Objetivo: Descrever o papel do enfermeiro nos cuidados paliativos, destacando a importância do conhecimento em cuidados paliativos e bioética para tomar decisões adequadas e implementar as diretrizes antecipadas de vontade dos pacientes. Método: Para realizar esta revisão, foram analisados sete artigos publicados entre 2018 e 2022. Os estudos selecionados abrangiam pesquisas qualitativas, revisões sistemáticas e guias de prática clínica. Resultados: Os resultados mostraram um aumento na produção científica sobre cuidados paliativos nos últimos anos, com a publicação de artigos em revistas de diferentes qualidades. Os estudos destacaram a importância do conhecimento em cuidados paliativos e bioética para os enfermeiros, ressaltando a necessidade de qualificação para tomar decisões adequadas e implementar as diretrizes antecipadas de vontade dos pacientes. A pesquisa também identificou os diagnósticos de enfermagem mais comuns e estabeleceu intervenções plausíveis no contexto de terminalidade. Além disso, enfatizou-se a relevância do conhecimento dos enfermeiros sobre práticas integrativas e complementares, buscando uma abordagem holística e humanizada no cuidado paliativo. Conclusão: Esta revisão destaca a importância da atuação do enfermeiro nos cuidados paliativos e ressalta a necessidade de qualificação e desenvolvimento de ações que promovam uma abordagem humanizada e melhoria na qualidade de vida dos pacientes. Apesar dos desafios identificados na prática de enfermagem nesse contexto, como a falta de preparo na graduação para lidar com o processo de morte e a necessidade de abordagens mais aprofundadas, é essencial que os enfermeiros baseiem suas condutas na humanização, bioética e respeito à dignidade humana do paciente, incluindo a intervenção nos sintomas físicos, sociais e emocionais.(AU)


Palliative care aims to improve the quality of life for patients and their families facing life-threatening illnesses, providing relief from physical, psychosocial, and spiritual suffering. Objective: To describe the nurse's role in palliative care, highlighting the importance of knowledge in palliative care and bioethics to make adopted decisions and implement advance directives of the patients' will. Method: To conduct this review, seven articles published between 2018 and 2022 were analyzed. The selected studies encompassed qualitative research, systematic reviews, and clinical practice guidelines. Results: The results showed an increase in scientific production on palliative care in recent years, with articles published in journals of varying quality. The studies emphasized the importance of knowledge in palliative care and bioethics for nurses, emphasizing the need for qualification to make appropriate decisions and implement patients' advance care directives. The research also identified the most common nursing diagnoses and established plausible interventions in the context of terminality. Additionally, the relevance of nurses' knowledge of integrative and complementary practices was emphasized, seeking a holistic and humanized approach to palliative care. Conclusion: This review highlights the importance of nurses' involvement in palliative care and underscores the need for qualification and the development of actions that promote a humanized approach and improvement in patients' quality of life. Despite the challenges identified in nursing practice in this context, such as the lack of preparation in undergraduate education to deal with the dying process and the need for more in-depth approaches, it is essential for nurses to base their conduct on humanization, bioethics, and respect for the human dignity of the patient, including intervention in physical, social, and emotional symptoms.(AU)


Los cuidados paliativos tienen como objetivo mejorar la calidad de vida de los pacientes y sus familias que enfrentan enfermedades potencialmente mortales.proporcionando alivio del sufrimiento físico, psicosocial y espiritual. Objetivo: Describir el papel de las enfermeras en cuidados paliativos, destacando la importancia del conocimiento en cuidados paliativos y bioética para tomar decisiones adecuadas e implementar directivas anticipadas de los deseos de los pacientes. Método: Para realizar esta revisión se utilizaron siete artículos publicados entre 2018 y 2022. Los estudios seleccionados cubrieron investigaciones cualitativas, revisiones sistemáticas y guías de práctica clínica. Resultados: Los resultados mostraron un aumento en la producción científica sobre cuidados paliativos en los últimos años, con la publicación de artículosen revistas de diferente calidad. Los estudios resaltaron la importancia del conocimiento en cuidados paliativos y bioética para enfermeras, destacando la necesidad de calificaciones para tomar decisiones apropiadas e implementar directivas anticipadas de los deseos de los pacientes. La investigación también identificó los diagnósticos de enfermería más comunes y las intervenciones establecidas.plausible en el contexto de la terminalidad. Además, se destacó la relevancia del conocimiento de las enfermeras sobre las prácticas.integrador y complementario, buscando un enfoque holístico y humanizado de los cuidados paliativos.(AU)


Asunto(s)
Cuidados Paliativos , Enfermería
3.
BMC palliat. care ; 23(1): 1-12, 20240501. ilus
Artículo en Inglés | BIGG | ID: biblio-1562032

RESUMEN

Despite a large burden of life-limitingillness, there exists a dearth of services of palliative care in Pakistan. International guidelines have questionable applicability in Pakistan due to the socioeconomic differences. We generated a protocol describing the process of developing comprehensive palliative care guidelines and palliative care referral pathways for primary care practitioners to adopt in Pakistan. A GRADE-ADOLOPMENT approach with modification has been employed to create guidelines for a Pakistani context. The "National Comprehensive Cancer Network Guidelines Insights: Palliative Care, Version 2.2021" was used as the source guideline. Recommendations from the source guideline were reviewed by two local palliative care specialists to either "Adopt," "Adapt" or "Exclude". The finalized recommendations were incorporated into the local palliative care guideline. Clinical diagnosis and referral pathways were made from the finalized guideline. Any gaps in management found in the pathways were filled by taking existing recommendations from other credible guidelines. Twenty-seven recommendations were adopted without modification. No recommendations were deemed to be adapted and 15 were excluded. The referral care pathways created were reflective of the local guideline and included elements of initial assessment, preliminary management, reassessment, and referral. 6 additional recommendations were made. The described clinical practice guidelines and primary care clinical referral pathways will aid to standardize palliative care provision in Pakistan. These can be used by other resource constrained settings to develop guidelines within their own local context.


Asunto(s)
Humanos , Cuidados Paliativos/normas , Personal de Salud/educación , Modelos de Atención de Salud , Pakistán
4.
Burns ; 50(6): 1632-1639, 2024 08.
Artículo en Inglés | MEDLINE | ID: mdl-38582696

RESUMEN

BACKGROUND: The need to integrate palliative/end-of-life care across healthcare systems is critical considering the increasing prevalence of health-related suffering. In burn care, however, a general lack of practice recommendations persists. Our burn unit developed practice recommendations to be implemented and this study aimed to examine the components of the practice recommendations that were utilised and aspects that were not to guide further training and collaborative efforts. METHODS: We employed a prospective clinical observation approach and chart review to ascertain the utilisation of the recommendations over a 3-year period for all burn patients. We formulated a set of trigger parametres based on existing literature and burn care staff consultation in our unit. Additionally, a checklist based on the practice recommendations was created to record the observations and chart review findings. All records were entered into a secure form on Google Forms following which we employed descriptive statistics in the form of counts and percentages to analyse the data. RESULTS: Of the 170 burn patients admitted, 66 (39%) persons died. Although several aspects of each practice recommendation were observed, post-bereavement support and collaboration across teams are still limited. Additionally, though the practice recommendations were comprehensive to support holistic care, a preponderance of delivering physical care was noted. The components of the practice recommendations that were not utilised include undertaking comprehensive assessment to identify and resolve patient needs (such as spiritual and psychosocial needs), supporting family members across the injury trajectory, involvement of a palliative care team member, and post-bereavement support for family members, and burn care staff. The components that were not utilised could have undoubtedly helped to achieve a comprehensive approach to care with greater family and palliative care input. CONCLUSION: We find a great need to equip burn care staff with general palliative care skills. Also, ongoing collaboration/ partnership between the burn care and palliative care teams need to be strengthened. Active family engagement, identifying, and resolving other patient needs beyond the physical aspect also needs further attention to ensure a comprehensive approach to end of life care in the burn unit.


Asunto(s)
Unidades de Quemados , Quemaduras , Unidades de Cuidados Intensivos , Cuidados Paliativos , Cuidado Terminal , Humanos , Quemaduras/terapia , Cuidados Paliativos/normas , Cuidado Terminal/normas , Masculino , Ghana , Femenino , Persona de Mediana Edad , Adulto , Unidades de Cuidados Intensivos/normas , Unidades de Cuidados Intensivos/organización & administración , Estudios Prospectivos , Unidades de Quemados/organización & administración , Anciano , Adulto Joven , Adolescente , Guías de Práctica Clínica como Asunto , Salud Holística , Centros de Atención Terciaria , Lista de Verificación
5.
Cancer Cell Int ; 24(1): 141, 2024 Apr 18.
Artículo en Inglés | MEDLINE | ID: mdl-38637796

RESUMEN

BACKGROUND: Prompt identification and assessment of the disease are essential for reducing the death rate associated with colorectal cancer (COL). Identifying specific causal or sensitive components, such as coding RNA (cRNA) and non-coding RNAs (ncRNAs), may greatly aid in the early detection of colorectal cancer. METHODS: For this purpose, we gave natural chemicals obtained from Sparassis latifolia (SLPs) either alone or in conjunction with chemotherapy (5-Fluorouracil to a mouse colorectal tumor model induced by AOM-DSS. The transcription profile of non-coding RNAs (ncRNAs) and their target hub genes was evaluated using qPCR Real-Time, and ELISA techniques. RESULTS: MSX2, MMP7, ITIH4, and COL1A2 were identified as factors in inflammation and oxidative stress, leading to the development of COL. The hub genes listed, upstream regulatory factors such as lncRNA PVT1, NEAT1, KCNQ1OT1, SNHG16, and miR-132-3p have been discovered as biomarkers for prognosis and diagnosis of COL. The SLPs and exercise, effectively decreased the size and quantity of tumors. CONCLUSIONS: This effect may be attributed to the modulation of gene expression levels, including MSX2, MMP7, ITIH4, COL1A2, PVT1, NEAT1, KCNQ1OT1, SNHG16, and miR-132-3p. Ultimately, SLPs and exercise have the capacity to be regarded as complementing and enhancing chemotherapy treatments, owing to their efficacious components.

6.
BMC Complement Med Ther ; 24(1): 163, 2024 Apr 19.
Artículo en Inglés | MEDLINE | ID: mdl-38641782

RESUMEN

PURPOSE: Chemotherapy-induced nausea and vomiting (CINV) is a common adverse events in cancer patients and can negatively affect their quality of life (QoL). This study aimed to evaluate the clinical efficacy of an electric massage chair (EMC) for the treatment of CINV. METHODS: A randomized phase II cross-over trial was conducted on solid cancer patients who received moderate (MEC) to high emetogenic chemotherapy (HEC). The participants were randomly assigned to receive their first chemotherapy either on a standard bed (Group A) or in an EMC (Group B) during the infusion. The patients were then crossed over to the next cycle. CINV and QoL questionnaires were collected from the participants. RESULTS: A total of 59 patients completed the trial protocol and were included in the analysis, with 29 and 30 patients in Groups A and B, respectively. The mean INVR (Index of Nausea, Vomiting, and Retching) score in the 2nd day of the first cycle was higher in Group B (3.63 ± 5.35) than Group A (2.76 ± 4.78), but the difference was not statistically significant (p = 0.5367). The complete response rate showed little difference between the groups. Among the high-emetic risk subgroups, patients who received HEC (p = 0.04595), younger patients (p = 0.0108), and non-colorectal cancer patients (p = 0.0495) presented significantly lower CINV scores when EMC was applied. CONCLUSION: Overall, there was no significant difference in INVR scores between standard care and EMC. Applying EMC at the first chemotherapy infusion may help preserve QoL and reduce CINV in high-risk patients. TRIAL REGISTRATION: KCT0008200, 17/02/2023, Retrospectively registered.


Asunto(s)
Antieméticos , Antineoplásicos , Neoplasias , Humanos , Calidad de Vida , Antieméticos/uso terapéutico , Antieméticos/efectos adversos , Estudios Cruzados , Vómitos/terapia , Vómitos/tratamiento farmacológico , Náusea/terapia , Náusea/tratamiento farmacológico , Neoplasias/tratamiento farmacológico , Antineoplásicos/efectos adversos
7.
J Palliat Care ; 39(3): 217-226, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38584432

RESUMEN

Background: Nurses should have appropriate education and required competencies to provide high-quality palliative care. The aim of this international multisite study was to list and evaluate core palliative care competencies that European nurses need to achieve in their education to provide palliative care. Methods: The Nominal Group Technique (NGT) was used as a data collection method. NGT meetings were organized in four European countries. Targeted groups of palliative care professionals with diverse contextual and professional backgrounds participated in the NGTs. The research question was: "What are the core competencies in palliative care that need to be achieved during undergraduate nursing education?" Data analysis was done in two stages: grouping the top 10 answers based on similarities and thematic synthesis based on all the ideas produced during the NGTs. Results: Palliative care core competencies based on the research were (1) competence in the characteristics of palliative care; (2) competence in decision-making and enabling palliative care; (3) symptom management competence in palliative care; (4) competence in holistic support in palliative care; (5) active person- and family-centered communication competence in palliative care; (6) competence in empathy in palliative care; (7) spiritual competence in palliative care; (8) competence in ethical and legal issues in palliative care; (9) teamwork competence in palliative care; and (10) self-awareness and self-reflection competence in palliative care. Conclusions: It was possible to find differences and similarities in the top 10 palliative care core competencies from different countries. Thematic synthesis of all the data showed that there were various competencies needed for nursing students to provide quality palliative care.


Asunto(s)
Competencia Clínica , Bachillerato en Enfermería , Cuidados Paliativos , Humanos , Competencia Clínica/normas , Cuidados Paliativos/normas , Bachillerato en Enfermería/normas , Masculino , Adulto , Femenino , Europa (Continente) , Enfermería de Cuidados Paliativos al Final de la Vida/educación , Persona de Mediana Edad , Internacionalidad
8.
Healthcare (Basel) ; 12(7)2024 Mar 26.
Artículo en Inglés | MEDLINE | ID: mdl-38610147

RESUMEN

Spirituality and spiritual needs are integral parts of the human experience, but they are often particularly important for palliative care patients. Spirituality has numerous positive effects, especially for those dealing with serious illness. Nevertheless, the spiritual dimension is sometimes overlooked in patient care. This study aims to determine the frequency of addressing the spiritual needs of palliative care patients in Croatia and to investigate the self-perceived confidence of caregivers in this task. A quantitative cross-sectional study was conducted involving 194 nurses in specialised palliative care services across Croatia. A specially developed and validated questionnaire was used for this study. The most common intervention undertaken by respondents was "promoting hope and optimism in patients" (88.4%), while the least common intervention was "reading books and other publications to patients" (13.9%). No statistically significant differences were found in the frequency of spiritual care in relation to the respondent's level of education, professional experience and nursing environment. Approximately two-thirds of the surveyed nurses stated that they "often" or "always" provided some kind of spiritual care to palliative care patients. However, study participants who indicated that they had received sufficient formal instruction in addressing spiritual needs and spiritual care interventions demonstrated a statistically significant tendency to engage in these practices, as well as greater confidence in their knowledge and skills in this area compared to those who lacked such training. The study suggests that there is a need to identify existing barriers to the provision of spiritual care and to develop strategies to overcome them. By placing emphasis on the spiritual needs and preferences of patients, nursing professionals and other healthcare providers have the opportunity to elevate the standard of holistic care and foster a sense of comfort and dignity among patients.

9.
BMC Palliat Care ; 23(1): 98, 2024 Apr 12.
Artículo en Inglés | MEDLINE | ID: mdl-38605315

RESUMEN

BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.


Asunto(s)
Planificación Anticipada de Atención , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Grupos de Población , Estigma Social , Salud Pública , Investigación Cualitativa
10.
Palliat Support Care ; : 1-9, 2024 Apr 08.
Artículo en Inglés | MEDLINE | ID: mdl-38587040

RESUMEN

OBJECTIVES: The study examines perspectives of patients in home hospice care; their informal caregivers; palliative health-care providers (HCPs); and family physicians, all regarding patients' unmet needs and quality of life (QoL)-related concerns. METHODS: Participants from all 4 groups were approached within 2 months after the patient's admission to the home hospice care unit. Participants completed Edmonton Symptom Assessment Scale (ESAS) and Measure Yourself Concerns and Wellbeing (MYCAW) questionnaires, for patient's QoL-related concerns. Qualitative analysis of short narratives was conducted using ATLAS.ti software for systematic coding. RESULTS: In total, 78 participants completed the study questionnaires: 24 patients, 22 informal caregivers, 22 palliative HCPs, and 11 family physicians. Informal caregivers gave higher scores (i.e., greater severity) than patients for fatigue on ESAS (p = 0.009); and family physicians lower scores than patients for ESAS drowsiness (p = 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%, p = 0.02); lower scores for gastrointestinal concerns (p = 0.048); and higher scores for overall function (p = 0.049). Qualitative assessment identified a gap between how patients/informal caregivers vs. palliative HCPs/family physicians regard emotional-spiritual themes, including discussing issues related to death and dying. SIGNIFICANCE OF RESULTS: The findings of the present study suggest that exploring a multifaceted cohort of home hospice patients, informal caregivers, palliative HCPs, and family physicians may provide insight on how to reduce communication gaps and address unmet needs of patients, particularly regarding emotional and spiritual concerns. CONCLUSIONS: While the 4 groups were similar in their scoring of patient QoL-related concerns, there were discrepancies for some concerns (e.g., patient fatigue) and expectations regarding the need to discuss emotional and spiritual concerns, including on death and dying. Educational initiatives with programs providing training to all 4 groups may help bridge this gap, creating a more open and collaborative hospice care environment.

11.
BMC Palliat Care ; 23(1): 86, 2024 Apr 01.
Artículo en Inglés | MEDLINE | ID: mdl-38556868

RESUMEN

Harmful use of illicit drugs and/or alcohol is linked to life-limiting illness and complex health and social care needs, but people who use substances and have complex needs do not receive timely palliative care and fail to achieve quality standards for a good death. They and their families often require support from multiple health and social care services which are shown to be poorly integrated and fail to deliver interdisciplinary care. This study aimed to identify the existing barriers and facilitators within and between services in providing this population with a good death. Using a mixed methods approach of survey, focus groups and semi-structured interviews, we explored the perspectives of practitioner and management staff across a range of health and social disciplines and organisations in one combined authority in a large city in the north west of England. Our findings indicate that practitioners want to provide better care for this client group, but face structural, organisational and professional boundary barriers to delivering integrated and shared care. Differences in philosophy of care, piecemeal commissioning and funding of services, and regulatory frameworks for different services, lead to poor and inequitable access to health and social care services. Ways forward for improving care are suggested as bespoke hostel-based accommodation for palliative care for this client group, and specialist link workers who can transcend professional and organisational boundaries to support co-ordination of services and support. We conclude that it is no longer adequate to call for more training, better communication and improved joint working. Complex care at the end of life requires creative and cohesive systemic responses that enable multi-disciplinary practitioners to provide the care they wish to give and enables individuals using substances to get the respect and quality service they deserve.


Asunto(s)
Prestación Integrada de Atención de Salud , Cuidados Paliativos al Final de la Vida , Trastornos Relacionados con Sustancias , Cuidado Terminal , Humanos , Estudios de Cohortes , Trastornos Relacionados con Sustancias/terapia
12.
J Palliat Med ; 27(7): 888-894, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38484328

RESUMEN

Background: Physical pain is highly prevalent and impacts the well-being of patients with advanced oncologic disease. Although myofascial pain syndrome (MPS) can be one of the components of pain in cancer patients on palliative care (PC), so far there is no evidence about the benefit of treatment with 1% lidocaine needling. Objectives: To evaluate the efficacy of MPS treatment with injection of 1% lidocaine on the reduction of pain in cancer patients on PC. Design: Single-blind randomized clinical trial. Subjects: Patients aged 50 years or older with end-stage cancer, admitted to a cancer ward or monitored during radiotherapy in three Brazilian hospitals, with a diagnosis of MPS with a pain intensity of five or more according to the Visual Analog Scale (VAS). The patients were divided into two groups: trigger point (TP) injection with 1% lidocaine and control. Measurements: Pain intensity was assessed with the VAS, pain threshold with an algometer, and the medications being used were determined before and 72 hours after the intervention. Results: Thirty patients (15 per group) were assessed. After 72 hours, there was a reduction in referred pain intensity (p < 0.001) and an increase in pressure threshold (p = 0.007) in the intervention group (IG), with no difference in the control. The frequency of individuals who reduced the doses and/or classes of pain medications was higher in the IG (p = 0.011). Conclusion: One percent lidocaine needling in TPs was an effective therapy for pain reduction in MPS.


Asunto(s)
Anestésicos Locales , Lidocaína , Síndromes del Dolor Miofascial , Neoplasias , Cuidados Paliativos , Humanos , Lidocaína/uso terapéutico , Lidocaína/administración & dosificación , Masculino , Femenino , Cuidados Paliativos/métodos , Persona de Mediana Edad , Anciano , Síndromes del Dolor Miofascial/tratamiento farmacológico , Síndromes del Dolor Miofascial/terapia , Método Simple Ciego , Anestésicos Locales/uso terapéutico , Anestésicos Locales/administración & dosificación , Neoplasias/complicaciones , Dimensión del Dolor , Brasil , Dolor en Cáncer/tratamiento farmacológico , Dolor en Cáncer/terapia , Anciano de 80 o más Años
13.
Palliat Med ; 38(3): 364-378, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38450624

RESUMEN

BACKGROUND: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. AIM: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives. DESIGN: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025). DATA SOURCES: Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP). RESULTS: A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes. CONCLUSION: Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes.


Asunto(s)
Musicoterapia , Cuidados Paliativos , Investigación Cualitativa , Humanos , Niño , Femenino , Adolescente , Masculino , Adulto , Participación de los Interesados , Pediatría , Preescolar
14.
J Pain Symptom Manage ; 68(1): 1-9, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38522805

RESUMEN

CONTEXT: Over the last 30 years, non-pharmacological treatment with ear acupuncture, including National Acupuncture Detoxification Association (NADA) acupuncture, has become popular in Western society to relieve cancer-related symptoms. OBJECTIVES: This study aim is to explore whether NADA acupuncture plays a role in relieving suffering experienced by patients hospitalized in a specialized palliative care ward and their family caregivers and whether it contributes to their coping skills. METHODS: A qualitative study with a hermeneutic approach utilizing inductive thematic content analysis. Purposeful sampling took place in a specialized palliative care ward in Denmark and all data were collected through semi-structured interviews with patients and family caregivers as either individual or family interviews. RESULTS: A total of 10 patients and 15 family caregivers participated in interviews. Four themes emerged: (1) communication about treatment with NADA acupuncture, (2) relief of suffering generates extra energy and inner strength, (3) sharing the experience with the family is beneficial, and (4) physical and psychological effects after receiving NADA acupuncture. CONCLUSION: Patients in palliative care and their family caregivers experienced relief of suffering after receiving NADA acupuncture, as well as improved well-being, and extra energy and inner strength to cope with their life situation. The ability to share NADA acupuncture gave family caregivers the feeling of being cared for and contributed to feelings of fellowship and togetherness within the family, strengthening their ability to communicate and cope.


Asunto(s)
Adaptación Psicológica , Cuidadores , Cuidados Paliativos , Investigación Cualitativa , Humanos , Cuidadores/psicología , Masculino , Femenino , Persona de Mediana Edad , Anciano , Adulto , Terapia por Acupuntura , Dinamarca , Anciano de 80 o más Años , Neoplasias/terapia , Neoplasias/psicología , Acupuntura Auricular , Familia/psicología , Entrevistas como Asunto
15.
J Music Ther ; 61(2): 102-131, 2024 May 16.
Artículo en Inglés | MEDLINE | ID: mdl-38484183

RESUMEN

The concept of relationship completion is embodied as the core belief for end-of-life care in Taiwan, known as the Four Expressions in Life. No studies have been published investigating and trying to understand how music therapy facilitates the Four Expressions in Life. This convergent mixed-methods study examined the effects of music therapy to facilitate relationship completion for patients at the end of life and their families in Taiwan, and explored their personal experiences in music therapy sessions. Thirty-four patients at end-of-life care and 36 of their family members participated in a single music therapy session with a one-group pretest-posttest design using standardized quality-of-life measures for patients at the end of life and families. A nested sample of 5 patients and 9 family members completed semi-structured interviews. Significant differences between the pre and post session scores were revealed for patients in the Life Completion subscale of the QUAL-E (p < .001), and the global QoL Indicator (p < .001), and for families in the Completion subscale of the QUAL-E (Fam) (p < .001), and the Overall Quality of Life (p < .001). Four themes around opportunities emerged from the interviews: the opportunity for exploration, for connection, for expression, and for healing. The integrated findings suggest that music therapy facilitated relationship completion and improved quality of life for both patients and their families. Furthermore, this study supports that the transformative level of music therapy practice within a single session for end-of-life care is attainable.


Asunto(s)
Musicoterapia , Calidad de Vida , Cuidado Terminal , Humanos , Musicoterapia/métodos , Femenino , Masculino , Cuidado Terminal/psicología , Cuidado Terminal/métodos , Taiwán , Persona de Mediana Edad , Anciano , Adulto , Familia/psicología , Anciano de 80 o más Años
16.
J Pain Symptom Manage ; 67(6): 544-553, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38479538

RESUMEN

CONTEXT: Despite making do-not-resuscitate or comfort care decisions during advance care planning, terminally ill patients sometimes receive life-sustaining treatments as they approach end of life. OBJECTIVES: To examine factors contributing to nonconcordance between end-of-life care and advance care planning. METHODS: In this longitudinal retrospective cohort study, terminally ill patients with a life expectancy shorter than six months, who had previously expressed a preference for do-not-resuscitate or comfort care, were followed up after palliative shared care intervention. An instrument with eight items contributing to non-concordant care, developed through literature review and experts' consensus, was employed. An expert panel reviewed electronic medical records to determine factors associated with non-concordant care for each patient. Statistical analysis, including descriptive statistics and the chi-square test, examines demographic characteristics, and associations. RESULTS: Among the enrolled 7871 patients, 97 (1.2%) received non-concordant care. The most prevalent factor was "families being too distressed about the patient's deteriorating condition and therefore being unable to let go" (84.5%) followed by "limited understanding of medical interventions among patients and surrogates" (38.1%), and "lack of patient participation in the decision-making process" (25.8%). CONCLUSIONS: This study reveals that factors related to relational autonomy, emotional support, and health literacy may contribute to non-concordance between advance care planning and end-of-life care. In the future, developing an advance care planning model emphasizes respecting relational autonomy, providing emotional support, and enhancing health literacy could help patients receiving a goal concordant and holistic end-of-life care.


Asunto(s)
Planificación Anticipada de Atención , Cuidado Terminal , Humanos , Masculino , Femenino , Anciano , Estudios Retrospectivos , Estudios Longitudinales , Persona de Mediana Edad , Anciano de 80 o más Años , Órdenes de Resucitación , Prioridad del Paciente , Enfermo Terminal , Cuidados Paliativos
17.
J Geriatr Oncol ; 15(3): 101740, 2024 04.
Artículo en Inglés | MEDLINE | ID: mdl-38513534

RESUMEN

INTRODUCTION: Studies about clinician acceptability of integrative palliative care interventions in the inpatient and outpatient cancer settings are limited. In this study, we examined clinician acceptability of a NIH-funded interdisciplinary PAlliative and Supportive Care inTervention (PACT) for older adults with acute myeloid leukemia (AML) and their care partners that transcends both inpatient and outpatient settings. MATERIALS AND METHODS: Data was collected using semi-structured interviews with clinicians who were directly involved in PACT. The domains of the Theoretical Framework of Acceptability were used to guide the qualitative analysis. RESULTS: The clinicians consisted of occupational therapists (37%), physical therapists (25%), registered nurses (25%), and a clinical rehabilitation manager (13%). Five themes were identified in the thematic analysis: (1) Emotions and affect towards the intervention, (2) Intervention coherence and self-efficacy, (3) Barriers, burden, and opportunity costs of delivering the intervention, (4) Usefulness and effectiveness of the intervention, and (5) Recommendations to improve intervention delivery. DISCUSSION: All clinicians found the PACT intervention highly acceptable and expressed the positive impact of the intervention on job fulfillment and satisfaction. Our findings provide evidence to inform the delivery and implementation of future large scale integrative palliative care intervention trials.


Asunto(s)
Cuidadores , Leucemia Mieloide Aguda , Humanos , Anciano , Leucemia Mieloide Aguda/terapia , Cuidados Paliativos
18.
Indian J Crit Care Med ; 28(3): 200-250, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38477011

RESUMEN

End-of-life care (EOLC) exemplifies the joint mission of intensive and palliative care (PC) in their human-centeredness. The explosion of technological advances in medicine must be balanced with the culture of holistic care. Inevitably, it brings together the science and the art of medicine in their full expression. High-quality EOLC in the ICU is grounded in evidence, ethical principles, and professionalism within the framework of the Law. Expert professional statements over the last two decades in India were developed while the law was evolving. Recent landmark Supreme Court judgments have necessitated a review of the clinical pathway for EOLC outlined in the previous statements. Much empirical and interventional evidence has accumulated since the position statement in 2014. This iteration of the joint Indian Society of Critical Care Medicine-Indian Association of Palliative Care (ISCCM-IAPC) Position Statement for EOLC combines contemporary evidence, ethics, and law for decision support by the bedside in Indian ICUs. How to cite this article: Mani RK, Bhatnagar S, Butola S, Gursahani R, Mehta D, Simha S, et al. Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit. Indian J Crit Care Med 2024;28(3):200-250.

19.
J Hosp Palliat Care ; 27(1): 1-10, 2024 Mar 01.
Artículo en Inglés | MEDLINE | ID: mdl-38449832

RESUMEN

This article underscores the importance of integrating comprehensive palliative care for noncancer patients who are undergoing hemodialysis, with an emphasis on the aging populations in Asian nations such as Taiwan, Japan, the Republic of Korea, and China. As the global demographic landscape shifts towards an aging society and healthcare continues to advance, a marked increase has been observed in patients undergoing hemodialysis who require palliative care. This necessitates an immediate paradigm shift to incorporate this care, addressing the intricate physical, psychosocial, and spiritual challenges faced by these individuals and their families. Numerous challenges impede the provision of effective palliative care, including difficulties in prognosis, delayed referrals, cultural misconceptions, lack of clinician confidence, and insufficient collaboration among healthcare professionals. The article proposes potential solutions, such as targeted training for clinicians, the use of telemedicine to facilitate shared decision-making, and the introduction of time-limited trials for dialysis to overcome these obstacles. The integration of palliative care into routine renal treatment and the promotion of transparent communication among healthcare professionals represent key strategies to enhance the quality of life and end-of-life care for people on hemodialysis. By embracing innovative strategies and fostering collaboration, healthcare providers can deliver more patient-centered, holistic care that meets the complex needs of seriously ill patients within an aging population undergoing hemodialysis.

20.
Palliat Care Soc Pract ; 18: 26323524241235191, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38487793

RESUMEN

Palliative care in community contexts is undergoing significant change as a result of public policy and new models of care, which link health promotion principles with palliative care practices. These models support the creation of partnerships between formal care structures and the communities in which care is provided. Given the central role of nurses in the institutional delivery of palliative care, particularly in the home, it is important to provide a systematic description of the activities of nurses that fall within the principles of health promotion. The objective was to describe the diverse range of nursing activities for health promotion that are provided in the palliative home care setting. This is an integrative review. Fifty-five studies listed in the MEDLINE, CINAHL and EMBASE databases, and published between 1999 and December 2022, were identified. Data analysis and presentation of the results were guided by Kellehear's Health-Promoting Palliative Care (HPPC) model. Six themes were identified to describe nursing activities for health promotion in the context of palliative home care: creating a meaningful relationship, supplying medical information, promoting self-care throughout the trajectory, providing emotional support, involving professional or community services and supporting change. The findings point to nurses focusing more on the individual context and on direct care. The relationship with communities in which they work remains unidirectional. However, some HPPC principles are relevant to nursing activities through the contextualization of nurses' actions and their moral responsibility to work towards the respect of patient's values. Being poorly described, how nurses can truly engage their practice towards health-promoting principles, such as the enhancement of support and control over their lives for people living with serious illness, still requires further empirical research.

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