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1.
BMC Palliat Care ; 23(1): 97, 2024 Apr 11.
Artigo em Inglês | MEDLINE | ID: mdl-38605309

RESUMO

OBJECTIVES: Existing literature suggests multiple potential roles for community health volunteers (CHVs) in the provision of palliative care (PC) in low- and middle-income countries. In Kenya the role of CHV in the provision of PC has not been reported. The objective of this study was to assess knowledge, confidence, attitude, and clinical practice of community health volunteers after attending a novel palliative care (PC) training program. METHODS: A total of 105 CHVs participated in a 3-day in person training followed by a 1-month in person and telephone observation period of the palliative care activities in the community. Structured questionnaires were used pre- and post-training to assess knowledge acquisition, impact on practice, and content delivery. A mixed method study design was conducted 12-month post training to assess impact on clinical practice. RESULTS: Immediately after training, CHV provided positive ratings on relevance and content delivery. In the month following training, CHVs evaluated 1,443 patients, referred 154, and conducted 110 and 129 tele consults with the patients and PC providers respectively. The follow up survey at 12 months revealed improved knowledge and confidence in various domains of palliative care including symptom and spiritual assessment and provision of basic nursing and bereavement care. Focus group discussions revealed the CHVs ability to interpret symptoms, make referrals, improved communication/ interpersonal relationships, spiritual intervention, patient comfort measures and health care practices as newly learned and practiced skills. CONCLUSIONS: We noted improved knowledge, new skills and change in practice after CHVs participation in a novel training curriculum. CHVs can make important contributions to the PC work force and be first line PC providers in the community as part of larger hub and spoke care model.


Assuntos
Cuidados Paliativos , Saúde Pública , Humanos , Quênia , Grupos Focais , Voluntários
2.
BMC Palliat Care ; 23(1): 98, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38605315

RESUMO

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.


Assuntos
Planejamento Antecipado de Cuidados , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Grupos Populacionais , Estigma Social , Saúde Pública , Pesquisa Qualitativa
3.
Syst Rev ; 13(1): 105, 2024 Apr 11.
Artigo em Inglês | MEDLINE | ID: mdl-38605398

RESUMO

BACKGROUND: Palliative care in low- or middle-income country (LMIC) humanitarian settings is a new area, experiencing a degree of increased momentum over recent years. The review contributes to this growing body of knowledge, in addition to identifying gaps for future research. The overall aim is to systematically explore the evidence on palliative care needs of patients and/or their families in LMIC humanitarian settings. METHODS: Arksey and O'Malley's (Int J Soc Res Methodol. 8:19-32, 2005) scoping review framework forms the basis of the study design, following further guidance from Levac et al. (Implement Sci 5:1-9, 2010), the Joanna Briggs Institute (JBI) Peters et al. (JBI Reviewer's Manual JBI: 406-452, 2020), and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) from Tricco et al. (Ann Intern Med 169:467-73, 2018). This incorporates a five-step approach and the population, concept, and context (PCC) framework. Using already identified key words/terms, searches for both published research and gray literature from January 2012 to October 2022 will be undertaken using databases (likely to include Cumulative Index of Nursing and Allied Health (CINAHL), MEDLINE, Embase, Global Health, Scopus, Applied Social Science Index and Abstracts (ASSIA), Web of Science, Policy Commons, JSTOR, Library Network International Monetary Fund and World Bank, Google Advanced Search, and Google Scholar) in addition to selected pre-print sites and websites. Data selection will be undertaken based on the inclusion and exclusion criteria and will be reviewed at each stage by two reviewers, with a third to resolve any differences. Extracted data will be charted in a table. Ethical approval is not required for this review. DISCUSSION: Findings will be presented in tables and diagrams/charts, followed by a narrative description. The review will run from late October 2022 to early 2023. This is the first systematic scoping review specifically exploring the palliative care needs of patients and/or their family, in LMIC humanitarian settings. The paper from the review findings will be submitted for publication in 2023.


Assuntos
Países em Desenvolvimento , Cuidados Paliativos , Humanos , Bases de Dados Factuais , Literatura Cinzenta , MEDLINE , Projetos de Pesquisa , Revisões Sistemáticas como Assunto
4.
J Prim Care Community Health ; 15: 21501319241245842, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38605629

RESUMO

INTRODUCTION/OBJECTIVES: Systematic identification of persons with palliative care needs constitutes a major challenge for promoting palliative care in all levels of the health system, including primary care. The aim of this study was to translate, cross-culturally adapt, and content validate Supportive and Palliative Care Indicators Tool (SPICT) for use in the Greek primary care context. Secondary objectives were to probe the use of SPICT-GR in exemplary case vignettes, to discuss the clarity and comprehensibility of its content as well as the appropriateness, acceptability, and feasibility of the tool within the Greek primary care. METHODS: The Greek translation and cross-cultural adaptation of SPICT™ followed World Health Organization recommendations for translation and adaptation of instruments. For this purpose a working group was set up consisting of 2 senior researchers, a primary care professional with postgraduate training in Palliative Medicine and a general practitioner (GP) with special interest in primary palliative care. Three focus groups comprised of health professionals (n = 23) working in primary care settings participated in the pilot testing phase. Participants also completed a questionnaire including rating their perceptions on tool's utility and feasibility as well as on the clarity and relevance of its items. Thematic analysis was used for focus groups discussions on how the tool was perceived and interpreted by health professionals in a Greek healthcare context and descriptive statistics for the quantitative analysis of the questionnaire data. RESULTS: The majority assessed the tool as useful (65%), considered its implementation in primary care as feasible (91%) and rated its items as "relevant" or "very relevant" and "clear" or "very clear." Three themes emerged from focus groups discussions: Guiding clinical practice and facilitating collaboration; promoting comprehensive care and awareness for palliative care; applicability in and suitability for primary care. CONCLUSIONS: SPICT-GR™ was identified as a practical and applicable tool for primary care, a source of guidance for the comprehensive identification of patients' palliative care needs, promoting awareness on palliative care and facilitating a shared language among health care professionals.


Assuntos
Atenção à Saúde , Cuidados Paliativos , Humanos , Grupos Focais
5.
J Cancer Res Clin Oncol ; 150(4): 191, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38607376

RESUMO

BACKGROUND: Palliative care (PC) contributes to improved end-of-life care for patients with hematologic malignancies (HM) and solid tumors (ST) by addressing physical and psychological symptoms and spiritual needs. Research on PC in HM vs. ST patients is fragmented and suggests less use. METHODS: We analyzed claims data of all deceased members of a large German health insurance provider for the year before death. First, we analyzed the frequency and the beginning of different types of PC and compared patients with HM vs. ST. Second, we analyzed the adjusted impact of PC use on several end-of-life quality outcomes in patients with HM vs. ST. We performed simple and multiple (logistic) regression analysis, adjusted for relevant covariates, and standardized for age and sex. RESULTS: Of the 222,493 deceased cancer patients from 2016 to 2020, we included 209,321 in the first analysis and 165,020 in the second analysis. Patients with HM vs. ST received PC less often (40.4 vs. 55.6%) and later (34 vs. 50 days before death). PC use significantly improved all six quality indicators for good end-of-life care. HM patients had worse rates in five of the six indicators compared with ST patients. Interaction terms revealed that patients with ST derived greater benefit from PC in five of six quality indicators than those with HM. CONCLUSION: The data highlight the need to integrate PC more often, earlier, and more effectively into the care of patients with HM.


Assuntos
Neoplasias Hematológicas , Assistência Terminal , Humanos , Cuidados Paliativos , Neoplasias Hematológicas/terapia , Pesquisa , Seguro Saúde
6.
BMC Palliat Care ; 23(1): 89, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38566178

RESUMO

BACKGROUND: A standardized national approach to routinely assessing palliative care patients helps improve patient outcomes. However, a quality improvement program-based on person centered outcomes within palliative care is lacking in Mainland China. The well-established Australian Palliative Care Outcome Collaboration (PCOC) national model improves palliative care quality. This study aimed to culturally adapt and validate three measures that form part of the PCOC program for palliative care clinical practice in China: The PCOC Symptom Assessment Scale (PCOC SAS), Palliative Care Problem Severity Scale (PCPSS), Palliative Care Phase. METHODS: A study was conducted on cross-cultural adaptation and validation of PCOC SAS, PCPSS and Palliative Care Phase, involving translation methods, cognitive interviewing, and psychometric testing through paired assessments. RESULTS: Cross-cultural adaptation highlighted the need to strengthen the link between the patient's care plan and the outcome measures to improve outcomes, and the concept of distress in PCOC SAS. Analysis of 368 paired assessments (n = 135 inpatients, 22 clinicians) demonstrated that the PCOC SAS and PCPSS had good and acceptable coherence (Cronbach's a = 0.85, 0.75 respectively). Palliative Care Phase detected patients' urgent needs. PCOC SAS and PCPSS showed fair discriminant and concurrent validity. Inter-rater reliability was fair for Palliative Care Phase (k = 0.31) and PCPSS (k = 0.23-0.30), except for PCPSS-pain, which was moderate (k = 0.53). CONCLUSIONS: The Chinese version of PCOC SAS, PCPSS, and Palliative Care Phase can be used to assess outcomes as part of routine clinical practice in Mainland China. Comprehensive clinical education regarding the assessment tools is necessary to help improve the inter-rater reliability.


Assuntos
Comparação Transcultural , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Psicometria , Reprodutibilidade dos Testes , Sistemas Automatizados de Assistência Junto ao Leito , Austrália , Avaliação de Resultados em Cuidados de Saúde/métodos , Inquéritos e Questionários
7.
Am J Hosp Palliat Care ; 41(5): 468-470, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38556759

RESUMO

The United States (US) has one of the highest rates of incarceration in the world. Due to the aging of the US population as a whole and limited opportunities for early release, the proportion of older people in prison continues to rise. Some correctional health systems have adopted geriatric and palliative care principles to better care for this aging population, many of whom die in prison. However, not everyone who grows old in prison will die behind bars. In this article, we explore existing literature that highlights the unique physical, cognitive, and psychosocial challenges that formerly incarcerated patients face. We proceed to argue that palliative care providers should screen for a history of incarceration to identify and address the needs of this patient population. We also offer strategies to create a safe, welcoming environment to discuss past traumas related to these patients' time in prison.


Assuntos
Cuidados Paliativos , Prisioneiros , Humanos , Estados Unidos , Idoso , Prisões , 60648
8.
Curr Opin Cardiol ; 39(3): 218-225, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38567949

RESUMO

PURPOSE OF REVIEW: Heart failure (HF) is characterized by significant symptoms, compromised quality of life, frequent hospital admissions, and high mortality, and is therefore well suited to palliative care (PC) intervention. This review elaborates the current PC needs of patients with HF across the spectrum of disease, including patients who undergo advanced HF surgical therapies, and reviews the current data and future directions for PC integration in HF care. RECENT FINDINGS: Patients with chronic HF, as well as those who are being evaluated for or who have undergone advanced HF surgical therapies such as left ventricular assist device or heart transplantation, have a number of PC needs, including decision-making, symptoms and quality of life, caregiver support, and end-of-life care. Available data primarily supports the use of PC interventions in chronic HF to improve quality of life and symptoms. PC skills and teams may also help address preparedness planning, adverse events, and psychosocial barriers in patients who have had HF surgeries, but more data are needed to determine association with outcomes. SUMMARY: Patients with HF have tremendous PC needs across the spectrum of disease. Despite this, more data are needed to determine the optimal timing and structure of PC interventions in patients with chronic HF, left ventricular assist device, and heart transplantation. Future steps must be taken in clinical, research, and policy domains in order to optimize care.


Assuntos
Insuficiência Cardíaca , Transplante de Coração , Assistência Terminal , Humanos , Cuidados Paliativos , Qualidade de Vida , Doença Crônica
9.
J Am Assoc Nurse Pract ; 36(4): 199-201, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38568145

RESUMO

ABSTRACT: Despite the best efforts of modern health care and critical care providers, many patients in the intensive care unit (ICU) will still die each year. The need for palliative care services in the ICU is common. Although specialty palliative care services provide excellent care and are a tremendous resource, every critical care provider should be able to provide the basics of palliative care themselves through the model of primary palliative care. Although it may be uncomfortable for the critical care provider at first, providing palliative care to our ICU patients can be a very rewarding experience. In this article, I discuss best practices for handling difficult conversations with patients and their families, helping patients and families make difficult decisions regarding the goals of care, and managing symptoms at the end of life.


Assuntos
Unidades de Terapia Intensiva , Cuidados Paliativos , Humanos , Cuidados Críticos , Morte
10.
BMC Palliat Care ; 23(1): 83, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38556869

RESUMO

BACKGROUND: Due to limited numbers of palliative care specialists and/or resources, accessing palliative care remains limited in many low and middle-income countries. Data science methods, such as rule-based algorithms and text mining, have potential to improve palliative care by facilitating analysis of electronic healthcare records. This study aimed to develop and evaluate a rule-based algorithm for identifying cancer patients who may benefit from palliative care based on the Thai version of the Supportive and Palliative Care Indicators for a Low-Income Setting (SPICT-LIS) criteria. METHODS: The medical records of 14,363 cancer patients aged 18 years and older, diagnosed between 2016 and 2020 at Songklanagarind Hospital, were analyzed. Two rule-based algorithms, strict and relaxed, were designed to identify key SPICT-LIS indicators in the electronic medical records using tokenization and sentiment analysis. The inter-rater reliability between these two algorithms and palliative care physicians was assessed using percentage agreement and Cohen's kappa coefficient. Additionally, factors associated with patients might be given palliative care as they will benefit from it were examined. RESULTS: The strict rule-based algorithm demonstrated a high degree of accuracy, with 95% agreement and Cohen's kappa coefficient of 0.83. In contrast, the relaxed rule-based algorithm demonstrated a lower agreement (71% agreement and Cohen's kappa of 0.16). Advanced-stage cancer with symptoms such as pain, dyspnea, edema, delirium, xerostomia, and anorexia were identified as significant predictors of potentially benefiting from palliative care. CONCLUSION: The integration of rule-based algorithms with electronic medical records offers a promising method for enhancing the timely and accurate identification of patients with cancer might benefit from palliative care.


Assuntos
Neoplasias , Cuidados Paliativos , Humanos , Reprodutibilidade dos Testes , Registros Eletrônicos de Saúde , Neoplasias/terapia , Mineração de Dados , Algoritmos
11.
BMC Palliat Care ; 23(1): 85, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38556894

RESUMO

BACKGROUND: There is a severe shortage of corneas for donation, globally, for transplantation and research purposes. One group of individuals who could potentially be donors are those who die within the inpatient palliative care unit. The aim of the study was to understand clinician and patient perceptions of corneal donations and discussion of donation in palliative care units. METHODS: A qualitative design was utilised with data collected through semi-structured interviews and analysed using qualitative content analysis. A total of 46 interviews were undertaken involving inpatient palliative care unit patients (19) and clinicians (27) in three major inpatient palliative care units in South Australia. RESULTS: Very few patient participants reported being asked about corneal donations during their time in palliative care. Most inpatient palliative care unit clinicians did not raise the topic as they felt other areas of care took precedence. Inpatient palliative care unit patients thought if inpatient palliative care unit clinicians did not raise the topic, then it was not important. There were some differences between patient and clinician views, such as preference about who raises the possibility of donation and when the discussion might occur. CONCLUSIONS: Findings suggest that patients are receptive to discussing corneal donations, but clinicians are not initiating these. This is a missed opportunity for donors and potential recipients. We recommend that clinicians routinely discuss eye donation as part of palliative care.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Córnea , Pacientes Internados , Austrália do Sul , Pesquisa Qualitativa
12.
Br J Hosp Med (Lond) ; 85(3): 1-8, 2024 Mar 02.
Artigo em Inglês | MEDLINE | ID: mdl-38557099

RESUMO

Enhanced supportive care is a care model providing earlier access to multiprofessional, coordinated care for patients from the point of cancer diagnosis. As a proactive model of care, it stands as a contrast to providing access to a multidisciplinary team once a patient has hit a crisis point, or when their prognosis has become sufficiently poor that they are able to access traditional end-of-life services. Its arrival in the UK through palliative care teams working in cancer care has led to enhanced supportive care being synonymous with early palliative care. While enhanced supportive care has enabled early palliative care, as it has become more embedded in the UK, it has taken on a wider remit for patients living longer with cancer and the management of side effects. Enhanced supportive care services have also begun to provide care for cancer survivors. Enhanced supportive care services have a key role in modern cancer care in maintaining and improving patients' quality of life alongside cancer treatment and ensuring that patients' priorities and preferences for treatment are considered. Furthermore, enhanced supportive care has been shown to support the wider healthcare system by creating capacity within the NHS, reducing demand on hospital services and saving money. As enhanced supportive care services continue to grow and venture into the care and support of cancer survivors and those receiving potentially curative treatments, ongoing work is needed to determine how these services can be made available throughout the NHS and how a shared vision of the way enhanced supportive care operates can be realised.


Assuntos
Neoplasias , Assistência Terminal , Humanos , Qualidade de Vida , Cuidados Paliativos , Neoplasias/terapia , Atenção à Saúde
13.
BMJ Support Palliat Care ; 13(e3): e1390-e1397, 2024 Jan 08.
Artigo em Inglês | MEDLINE | ID: mdl-38557352

RESUMO

OBJECTIVES: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. METHODS: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. RESULTS: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. CONCLUSION: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.


Assuntos
Cuidadores , Cuidados Paliativos , Humanos , Cuidadores/educação , Cuidados Paliativos/métodos , Atenção à Saúde , Preparações Farmacêuticas , Inquéritos e Questionários
14.
BMC Palliat Care ; 23(1): 88, 2024 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-38561727

RESUMO

BACKGROUND: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. METHODS: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. RESULTS: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). CONCLUSION: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. TRIAL REGISTRATION: NCT04678310. Registered 21/12/2020.


Assuntos
Pandemias , Assistência Terminal , Humanos , Assistência Terminal/métodos , Cuidados Paliativos , Hospitais , Voluntários , Pesquisa Qualitativa
15.
Support Care Cancer ; 32(5): 275, 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38589750

RESUMO

PURPOSE: This review aimed to assess the measurement and reporting of time toxicity (i.e., time spent receiving care) within prospective oncologic studies. METHODS: On July 23, 2023, PubMed, Scopus, and Embase were queried for prospective or randomized controlled trials (RCT) from 1984 to 2023 that reported time toxicity as a primary or secondary outcome for oncologic treatments or interventions. Secondary analyses of RCTs were included if they reported time toxicity. The included studies were then evaluated for how they reported and defined time toxicity. RESULTS: The initial query identified 883 records, with 10 studies (3 RCTs, 2 prospective cohort studies, and 5 secondary analyses of RCTs) meeting the final inclusion criteria. Treatment interventions included surgery (n = 5), systemic therapies (n = 4), and specialized palliative care (n = 1). The metric "days alive and out of the hospital" was used by 80% (n = 4) of the surgical studies. Three of the surgical studies did not include time spent receiving ambulatory care within the calculation of time toxicity. "Time spent at home" was assessed by three studies (30%), each using different definitions. The five secondary analyses from RCTs used more comprehensive metrics that included time spent receiving both inpatient and ambulatory care. CONCLUSIONS: Time toxicity is infrequently reported within oncologic clinical trials, with no standardized definition, metric, or methodology. Further research is needed to identify best practices in the measurement and reporting of time toxicity to develop strategies that can be implemented to reduce its burden on patients seeking cancer care.


Assuntos
Neoplasias , Humanos , Neoplasias/tratamento farmacológico , Cuidados Paliativos
17.
Lakartidningen ; 1212024 Apr 09.
Artigo em Sueco | MEDLINE | ID: mdl-38591840

RESUMO

The WHO definition of paediatric palliative care (PPC) emphasises the role of active multidimensional care, carried out with interdisciplinary competence, and providing support to the entire family. The aim of the current national study was to investigate whether parents perceived that their child received palliative care (PC) before the child died of cancer and the parent's view of the care during the child's last month of life. In 2016, parents (n=226) completed a study-specific survey, and a majority reported that their child had received PC with good professional competence. However, many parents reported that the child was greatly affected by pain in the last month of life. Geographical differences indicated that parents who live in sparsely populated areas to a lesser extent reported that their child received PC. Lastly, our conclusion is that access to equal PPC and improved symptom control is crucial for children and their families.


Assuntos
Neoplasias , Cuidados Paliativos , Criança , Humanos , Pais , Neoplasias/terapia , Dor , Morte
18.
Andes Pediatr ; 95(1): 24-33, 2024 Feb.
Artigo em Espanhol | MEDLINE | ID: mdl-38587341

RESUMO

Gastrointestinal symptoms and problems (GI- SP) frequently cause discomfort and suffering in pediatric patients with life-threatening and/or life-limiting illnesses (LTI/LLI). Pediatric palliative care (PPC) professionals should be aware of them and perform a comprehensive approach. OBJECTIVE: To determine the prevalence of GI- SP in patients treated in PPC units and to describe the pharmacological and non-pharmacological measures prescribed. PATIENTS AND METHOD: Observational, prospective, multicenter, prospective study in patients with LTI/LLI, seen by PPC teams in Uruguay. The variables analyzed included age, sex, origin, type of LTI/LLI, presence of mucositis, vomiting, swallowing disorders, abdominal pain, constipation, diarrhea, digestive bleeding, problems with digestive prosthesis, and prescribed pharmacological and non-pharmacological treatment. RESULTS: 10 out of 16 PPC teams participated. 96 out of 436 patients seen presented GI- SP (22%). Median age was 4.2 years (1 month-18 years). LTI/LLI: 65% neurological and 7% oncological. The 96 patients had 114 consultations; 50% had 2 or more GI- SP per consultation. GI- SP observed: swallowing disorders (57%), constipation (53%), nausea and/or vomiting (24%), gastrostomy problems (17%), abdominal pain (10%), digestive bleeding (3%), and diarrhea (2%). There were variable prescriptions of pharmacological and non-pharmacological measures; only 50% of those with swallowing disorder received speech and hearing therapy. CONCLUSIONS: GI- SP motivated consultations in all PPC settings, frequently due to 2 or more GI- SP. Swallowing disorders and gastrostomy complications are frequent but not very visible problems in PPC. According to the comprehensive approach, pharmacological and non-pharmacological measures were implemented.


Assuntos
Transtornos de Deglutição , Gastroenteropatias , Criança , Pré-Escolar , Humanos , Dor Abdominal/epidemiologia , Dor Abdominal/etiologia , Dor Abdominal/terapia , Constipação Intestinal , Transtornos de Deglutição/epidemiologia , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/terapia , Diarreia/epidemiologia , Diarreia/terapia , Gastroenteropatias/epidemiologia , Gastroenteropatias/terapia , Cuidados Paliativos , Estudos Prospectivos , Vômito/epidemiologia , Vômito/etiologia , Vômito/terapia , Masculino , Feminino , Lactente , Adolescente
19.
Front Public Health ; 12: 1330370, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38596518

RESUMO

Introduction: Many of the essential practices in palliative care (PC) had to be adapted to the COVID-19 pandemic. This global spread of the infectious respiratory disease, caused by SARS-CoV-2, created unprecedented obstacles. The aim of this research was to comprehensively assess the experiences and perceptions of healthcare professionals, individuals, and families in palliative and end-of-life situations during the COVID-19 pandemic. Methods: A scoping review was conducted using the databases CINAHL Complete, MEDLINE, Scopus, SciELO, Cochrane Central Register of Controlled Trials, Psychology and Behavioral Sciences, MEDIClatina, and Portugal's Open Access Scientific Repository. The review followed the JBI® methodological approach for scoping reviews. Results: Out of the initially identified 999 articles, 22 studies were included for analysis. The deprivation of relationships due to the safety protocols required to control the spread of COVID-19 was a universally perceived experience by healthcare professionals, individuals in PC, and their families. Social isolation, with significant psychological impact, including depersonalization and despair, was among the most frequently reported experiences by individuals in palliative situation. Despite healthcare professionals' efforts to mitigate the lack of relationships, the families of these individuals emphasized the irreplaceability of in-person bedside contact. Systematic review registration: https://osf.io/xmpf2/.


Assuntos
COVID-19 , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicologia , COVID-19/terapia , COVID-19/epidemiologia , Pandemias , SARS-CoV-2 , Pessoal de Saúde/psicologia
20.
BMC Geriatr ; 24(1): 310, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38570758

RESUMO

BACKGROUND: The anticipatory prescribing of injectable controlled drugs (ICDs) by general practitioners (GPs) to care home residents is common practice and is believed to reduce emergency hospital transfers at the end-of-life. However, evidence about the process of ICD prescribing and how it affects residents' hospital transfer is limited. The study examined how care home nurses and senior carers (senior staff) describe their role in ICDs prescribing and identify that role to affect residents' hospital transfers at the end-of-life. METHODS: 1,440 h of participant observation in five care homes in England between May 2019 and March 2020. Semi-structured interviews with a range of staff. Interviews (n = 25) and fieldnotes (2,761 handwritten A5 pages) were analysed thematically. RESULTS: Senior staff request GPs to prescribe ICDs ahead of residents' expected death and review prescribed ICDs for as long as residents survive. Senior staff use this mechanism to ascertain the clinical appropriateness of withholding potentially life-extending emergency care (which usually led to hospital transfer) and demonstrate safe care provision to GPs certifying the medical cause of death. This enables senior staff to facilitate a care home death for residents experiencing uncertain dying trajectories. CONCLUSION: Senior staff use GPs' prescriptions and reviews of ICDs to pre-empt hospital transfers at the end-of-life. Policy should indicate a clear timeframe for ICD review to make hospital transfer avoidance less reliant on trust between senior staff and GPs. The timeframe should match the period before death allowing GPs to certify death without triggering a Coroner's referral.


Assuntos
Casas de Saúde , Assistência Terminal , Humanos , Cuidados Paliativos , Pesquisa Qualitativa , Hospitais , Morte
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