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1.
BMC Palliat Care ; 23(1): 163, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38951852

RESUMO

BACKGROUND: National palliative care plans depend upon stakeholder engagement to succeed. Assessing the capability, interest, and knowledge of stakeholders is a crucial step in the implementation of public health initiatives, as recommended by the World Health Organisation. However, utilising stakeholder analysis is a strategy underused in public palliative care. OBJECTIVE: To conduct a stakeholder analysis characterising a diverse group of stakeholders involved in implementing a national palliative care plan in three rural regions of an upper-middle-income country. METHODS: A descriptive cross-sectional study design, complemented by a quantitative stakeholder analysis approach, was executed through a survey designed to gauge stakeholders' levels of interest and capability in relation to five fundamental dimensions of public palliative care: provision of services, accessibility of essential medicines, palliative care education, financial support, and palliative care vitality. Stakeholders were categorised as promoters (high-power, high-interest), latent (high-power, low-interest), advocates (low-power, high-interest), and indifferent (low-power and low-interest). Stakeholder self-perceived category and knowledge level were also assessed. RESULTS: Among the 65 surveyed stakeholders, 19 were categorised as promoters, 34 as advocates, 9 as latent, and 3 as indifferent. Stakeholders' self-perception of their category did not align with the results of the quantitative analysis. When evaluated by region and palliative care dimensions the distribution of stakeholders was nonuniform. Palliative care funding was the dimension with the highest number of stakeholders categorised as indifferent, and the lowest percentage of promoters. Stakeholders categorised as promoters consistently reported a low level of knowledge, regardless of the dimension, region, or their level of interest. CONCLUSIONS: Assessing the capability, interest, and knowledge of stakeholders is a crucial step when implementing public health initiatives in palliative care. It allows for a data-driven decision-making process on how to delegate responsibilities, administer financial resources, and establish governance boards that remain engaged and work efficiently.


Assuntos
Cuidados Paliativos , Participação dos Interessados , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Estudos Transversais , Inquéritos e Questionários , Masculino , Feminino , Adulto , Pessoa de Meia-Idade
2.
Rev Bras Enferm ; 77Suppl 1(Suppl 1): e20230218, 2024.
Artigo em Inglês, Português | MEDLINE | ID: mdl-38958353

RESUMO

OBJECTIVE: To comprehend the multiprofessional actions regarding palliative care for patients in the Intensive Care Unit affected by SARS-CoV-2. METHODS: A comprehensive qualitative study conducted with 31 professionals from the Intensive Care Units of a university hospital, based on the Theory of Peaceful End of Life. RESULTS: The analysis of the discourse led to the identification of two categories: "Multidisciplinary actions to promote comfort at the end of life" and "Palliative care during the pandemic period and the promotion of emotional and spiritual comfort." FINAL CONSIDERATIONS: It became evident that local administration needs to invest in measures that reduce barriers to the implementation of palliative care during times of crisis. Understanding the discourse highlighted that non-specialized professionals can provide basic palliative care appropriately, without diminishing the importance and necessity of the presence of palliative care specialists in various hospital areas.


Assuntos
COVID-19 , Unidades de Terapia Intensiva , Cuidados Paliativos , Pesquisa Qualitativa , SARS-CoV-2 , Humanos , COVID-19/terapia , Unidades de Terapia Intensiva/organização & administração , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Feminino , Masculino , Pandemias , Pessoa de Meia-Idade , Adulto , Brasil
3.
BMC Palliat Care ; 23(1): 164, 2024 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-38961387

RESUMO

BACKGROUND: Neonatal nurses should provide timely and high-quality palliative care whenever necessary. It's necessary to investigate the knowledge, attitude and behavior of palliative care among neonatal nurses, to provide references and evidences for clinical palliative care. METHODS: Neonatal intensive care unit (NICU) nurses in a tertiary hospital of China were selected from December 1 to 16, 2022. The palliative care knowledge, attitude and behavior questionnaire was used to evaluate the current situation of palliative nursing knowledge, attitude and behavior of NICU nurses. Univariate analysis and multivariate logistic regression analysis were used to analyze the influencing factors. RESULTS: 122 nurses were finally included. The average score of knowledge in neonatal nurses was 7.68 ± 2.93, the average score of attitude was 26.24 ± 7.11, the score of behavior was 40.55 ± 8.98, the average total score was 74.03 ± 10.17. Spearman correlation indicated that score of knowledge, attitude and behavior of palliative care in neonatal nurses were correlated with the age(r = 0.541), year of work experience(r = 0.622) and professional ranks and titles(r = 0.576) (all P < 0.05). Age (OR = 1.515, 95%CI: 1.204 ~ 1.796), year of work experience (OR = 2.488, 95%CI: 2.003 ~ 2.865) and professional ranks and titles (OR = 2.801, 95%CI: 2.434 ~ 3.155) were the influencing factors of score of knowledge, attitude and behavior of palliative care (all P < 0.05). PUBLIC CONTRIBUTION: NICU nurses have a positive attitude towards palliative care, but the practical behavior of palliative care is less and lack of relevant knowledge. Targeted training should be carried out combined with the current situation of knowledge, attitude and practice of NICU nurses to improve the palliative care ability and quality of NICU nurses.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos , Humanos , Adulto , Feminino , Inquéritos e Questionários , China , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Masculino , Enfermeiros Neonatologistas/psicologia , Unidades de Terapia Intensiva Neonatal/organização & administração , Atitude do Pessoal de Saúde , Pessoa de Meia-Idade , Enfermagem Neonatal/métodos , Enfermagem Neonatal/normas , Modelos Logísticos
4.
BMC Palliat Care ; 23(1): 165, 2024 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-38970056

RESUMO

BACKGROUND: The economic assessment of health care models in palliative care promotes their global development. The purpose of the study is to assess the cost-effectiveness of a palliative care program (named Contigo) with that of conventional care from the perspective of a health benefit plan administrator company, Sanitas, in Colombia. METHODS: The incremental cost-utility ratio (ICUR) and the incremental net monetary benefit (INMB) were estimated using micro-costing in a retrospective, analytical cross-sectional study on the care of terminally ill patients enrolled in a palliative care program. A 6-month time horizon prior to death was used. The EQ-5D-3 L questionnaire (EQ-5D-3 L) and the McGill Quality of Life Questionnaire (MQOL) were used to measure the quality of life. RESULTS: The study included 43 patients managed within the program and 16 patients who received conventional medical management. The program was less expensive than the conventional practice (difference of 1,924.35 US dollars (USD), P = 0.18). When compared to the last 15 days, there is a higher perception of quality of life, which yielded 0.25 in the EQ-5D-3 L (p < 0.01) and 1.55 in the MQOL (P < 0.01). The ICUR was negative and the INMB was positive. CONCLUSION: Because the Contigo program reduces costs while improving quality of life, it is considered to be net cost-saving and a model with value in health care. Greater availability of palliative care programs, such as Contigo, in Colombia can help reduce existing gaps in access to universal palliative care health coverage, resulting in more cost-effective care.


Assuntos
Análise Custo-Benefício , Cuidados Paliativos , Humanos , Colômbia , Cuidados Paliativos/economia , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Análise Custo-Benefício/métodos , Masculino , Feminino , Estudos Transversais , Pessoa de Meia-Idade , Estudos Retrospectivos , Idoso , Inquéritos e Questionários , Qualidade de Vida/psicologia , Adulto , Idoso de 80 Anos ou mais
5.
BMC Palliat Care ; 23(1): 166, 2024 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-38970100

RESUMO

BACKGROUND: The countries of the world are becoming increasingly multicultural and diverse, both as a result of growing migration, of people fleeing countries at war but also due to increased mobility related to labour immigration. Culture is a broad concept where the definitions focus on learned and shared values, traditions, and beliefs of a group of individuals. People's culture affects health and perceptions of illness as well as treatment, symptoms, and care. Moreover, people who are at the end of life, live and exist within all levels and contexts of care. Specialized palliative care requires that the nurse has sufficient knowledge and skills to be responsible for meeting the patient's nursing needs also on a cultural level, regardless of cultural affiliation. The aim of the study was to highlight nurses' experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care. METHODS: The study was conducted with a qualitative design and inductive approach. Semi-structured interviews were conducted with twelve nurses in western Sweden. Data were analysed using qualitative content analysis. RESULTS: The nurses had an awareness of culture as a phenomenon and how it affected palliative care at the end of life. The results showed two categories, Awareness of the impact of culture on nursing and Culture's impact and influence on the nurse's mindset and approach, consisting of seven subcategories that highlight the nurse's experience. It emerged that there are differences between cultures regarding notions of dying and death, who should be informed, and treatments. There were also challenges and emotions that arose when cultural preferences differed among everyone involved. A person-centred approach allowed for recognition of the dying person's culture, to meet diverse cultural needs and wishes. CONCLUSION: Providing culturally competent care is a major challenge. There are often no routines or methods prescribed for how nurses should relate to and handle the diversity of cultural notions that may differ from the values and cornerstones of palliative care. Having a person-centred approach as strategy can help to better manage the situation and provide equitable care on terms that respect cultural diversity.


Assuntos
Cuidados Paliativos , Pesquisa Qualitativa , Assistência Terminal , Humanos , Feminino , Suécia , Adulto , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Assistência Terminal/psicologia , Assistência Terminal/métodos , Enfermeiras e Enfermeiros/psicologia , Entrevistas como Assunto/métodos , Atitude do Pessoal de Saúde
6.
Ann Intern Med ; 177(7): ITC97-ITC112, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38976884

RESUMO

Palliative care (PC) is the art and science of providing goal-concordant care, skillfully managing complex and refractory pain and nonpain symptoms, mitigating suffering, and augmenting quality of life for seriously ill patients throughout the course of the illness trajectory. The primary team should provide generalist PC for all seriously ill patients and know when to refer patients to specialist PC. Specialty-level PC services should be reserved for complex problems beyond the scope of primary PC. This article reviews principles and best practices to support patient-centered PC.


Assuntos
Cuidados Paliativos , Assistência Centrada no Paciente , Humanos , Cuidados Paliativos/normas , Qualidade de Vida , Estado Terminal/terapia , Assistência Terminal/normas , Equipe de Assistência ao Paciente , Guias de Prática Clínica como Assunto
7.
BMC Palliat Care ; 23(1): 171, 2024 Jul 15.
Artigo em Inglês | MEDLINE | ID: mdl-39004730

RESUMO

BACKGROUND: Despite pain control being a top priority in end-of-life care, pain continues to be a troublesome symptom and comprehensive data on pain prevalence and pain relief in patients with different diagnoses are scarce. METHODS: The Swedish Register of Palliative Care (SRPC) was used to retrieve data from 2011 to 2022 about pain during the last week of life. Data were collected regarding occurrence of pain, whether pain was relieved and occurrence of severe pain, to examine if pain differed between patients with cancer, heart failure, chronic obstructive pulmonary disease (COPD) and dementia. Binary logistic regression models adjusted for sex and age were used. RESULTS: A total of 315 000 patients were included in the study. Pain during the last week of life was more commonly seen in cancer (81%) than in dementia (69%), heart failure (68%) or COPD (57%), also when controlled for age and sex, p < 0.001. Severe forms of pain were registered in 35% in patients with cancer, and in 17-21% in non-cancer patients. Complete pain relief (regardless of pain intensity) was achieved in 73-87% of those who experienced pain, depending on diagnosis. The proportion of patients with complete or partial pain relief was 99.8% for the whole group. CONCLUSIONS: The occurrence of pain, including severe pain, was less common in patients with heart failure, COPD or dementia, compared to patients with cancer. Compared with cancer, pain was more often fully relieved for patients with dementia, but less often in heart failure and COPD. As severe pain was seen in about a third of the cancer patients, the study still underlines the need for better pain management in the imminently dying. TRIAL REGISTRATION: No trial registration was made as all patients were deceased and all data were retrieved from The Swedish Register of Palliative Care database.


Assuntos
Manejo da Dor , Dor , Sistema de Registros , Assistência Terminal , Humanos , Masculino , Sistema de Registros/estatística & dados numéricos , Feminino , Suécia , Idoso , Assistência Terminal/métodos , Assistência Terminal/normas , Assistência Terminal/estatística & dados numéricos , Idoso de 80 Anos ou mais , Prevalência , Manejo da Dor/métodos , Manejo da Dor/normas , Manejo da Dor/estatística & dados numéricos , Pessoa de Meia-Idade , Dor/etiologia , Neoplasias/complicações , Doença Pulmonar Obstrutiva Crônica/complicações , Doença Pulmonar Obstrutiva Crônica/terapia , Adulto , Medição da Dor/métodos , Insuficiência Cardíaca/complicações , Insuficiência Cardíaca/terapia , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Modelos Logísticos
9.
Support Care Cancer ; 32(7): 476, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38954101

RESUMO

CONTEXT: Home palliative care service increases the chance of dying at home, particularly for patients with advanced cancer, but late referrals to home palliative care services still exist. Indicators for evaluating programs that can facilitate the integration of oncology and home palliative care have not been defined. OBJECTIVES: This study developed quality indicators for the integration of oncology and home palliative care in Japan. METHODS: We conducted a systematic literature review (Databases included CENTRAL, MEDLINE, EMBASE, and Emcare) and a modified Delphi study to develop the quality indicators. Panelists rated a potential list of indicators using a 9-point scale over three rounds according to two criteria: appropriateness and feasibility. The criterion for the adoption of candidate indicators was set at a total mean score of 7 or more. Final quality indicators with no disagreement were included. RESULTS: Of the 973 publications in our initial search, 12 studies were included. The preliminary list of quality indicators by systematic literature review comprised 50 items. In total, 37 panelists participated in the modified Delphi study. Ultimately, 18 indicators were identified from the following domains: structure in cancer hospitals, structure in home palliative care services, the process of home palliative care service delivery, less aggressive end-of-life care, patient's psychological comfort, caregiver's psychological comfort, and patient's satisfaction with home palliative care service. CONCLUSION: Comprehensive quality indicators for the integration of oncology and home palliative care were identified. These indicators may facilitate interdisciplinary collaboration between professional healthcare providers in both cancer hospitals and home palliative care services.


Assuntos
Técnica Delphi , Serviços de Assistência Domiciliar , Neoplasias , Cuidados Paliativos , Indicadores de Qualidade em Assistência à Saúde , Humanos , Cuidados Paliativos/normas , Cuidados Paliativos/organização & administração , Cuidados Paliativos/métodos , Serviços de Assistência Domiciliar/normas , Serviços de Assistência Domiciliar/organização & administração , Japão , Neoplasias/terapia , Oncologia/organização & administração , Oncologia/normas
10.
BMC Palliat Care ; 23(1): 172, 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39010021

RESUMO

BACKGROUND: Patients receiving palliative care are often on complex medication regimes to manage their symptoms and comorbidities and at high risk of medication-related problems. The aim of this cross-sectional study was to evaluate the involvement of a pharmacist to an existing community specialist palliative care telehealth service on patients' medication management. METHOD: The specialist palliative care pharmacist attended two palliative care telehealth sessions per week over a six-month period (October 2020 to March 2021). Attendance was allocated based on funding received. Data collected from the medication management reviews included prevalence of polypharmacy, number of inappropriate medication according to the Screening Tool of Older Persons Prescriptions in Frail adults with limited life expectancy criteria (STOPP/FRAIL) and recommendations on deprescribing, symptom control and medication management. RESULTS: In total 95 patients participated in the pharmaceutical telehealth service with a mean age of 75.2 years (SD 10.67). Whilst 81 (85.3%) patients had a cancer diagnosis, 14 (14.7%) had a non-cancer diagnosis. At referral, 84 (88.4%, SD 4.57) patients were taking ≥ 5 medications with 51 (53.7%, SD 5.03) taking ≥ 10 medications. According to STOPP/FRAIL criteria, 142 potentially inappropriate medications were taken by 54 (56.8%) patients, with a mean of 2.6 (SD 1.16) inappropriate medications per person. Overall, 142 recommendations were accepted from the pharmaceutical medication management review including 49 (34.5%) related to deprescribing, 20 (14.0%) to medication-related problems, 35 (24.7%) to symptom management and 38 (26.8%) to medication administration. CONCLUSION: This study provided evidence regarding the value of including a pharmacist in palliative care telehealth services. Input from the pharmacist resulted in improved symptom management of community palliative care patients and their overall medication management.


Assuntos
Cuidados Paliativos , Farmacêuticos , Telemedicina , Humanos , Estudos Transversais , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Idoso , Telemedicina/normas , Feminino , Masculino , Idoso de 80 Anos ou mais , Conduta do Tratamento Medicamentoso/normas , Polimedicação , Pessoa de Meia-Idade
11.
BMC Palliat Care ; 23(1): 177, 2024 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-39026237

RESUMO

BACKGROUND: Improving palliative care for inpatients is urgently needed. Data from patient-reported experience measures (PREM) can assist in identifying areas for focused improvement. This study aimed to describe patient reported experience of care in inpatients with palliative care needs, to inform a baseline understanding of care experience and identify key areas for improvement. METHODS: Cross-sectional study design where inpatients with palliative care needs were invited to complete 'consideRATE,' a patient reported experience measure of care, over six months in 2022. Inpatients with palliative care needs receiving care on an oncology, general medicine/renal and general medicine/respiratory ward (n = 3) at an Australian metropolitan hospital were screened for eligibility. Carers could provide proxy responses where inpatients were unable to participate. Descriptive statistics were used to analyse quantitative ratings, whilst free text responses were analysed using integrated thematic analysis. RESULTS: One-hundred and twenty participants (108 patients and 12 carers) completed consideRATE. The questions with the highest number of 'very good' responses were attention to symptoms, attention to feelings and attention to what matters most; the questions with the lowest number of 'very good' responses was attention to patients' affairs, what to expect, and the environment of care. Almost half (n = 57, 48%) indicated that attention to patients' affairs 'did not apply' to their inpatient stay. Analysis of 532 free text responses across 8 questions highlighted the importance of feeling supported, feeling informed, feeling heard and navigating the clinical environment. CONCLUSION: Enabling inpatients with palliative care needs to provide feedback about their experience of care is one method of ensuring improvements matter to patients. Supporting clinical teams to understand and use these data to make tailored improvements is the next step in this multi-phase research.


Assuntos
Pacientes Internados , Cuidados Paliativos , Humanos , Estudos Transversais , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Pacientes Internados/psicologia , Pacientes Internados/estatística & dados numéricos , Idoso de 80 Anos ou mais , Adulto , Austrália , Inquéritos e Questionários , Satisfação do Paciente , Medidas de Resultados Relatados pelo Paciente
13.
BMC Palliat Care ; 23(1): 170, 2024 Jul 13.
Artigo em Inglês | MEDLINE | ID: mdl-39003463

RESUMO

BACKGROUND: The generalist-plus-specialist palliative care model is endorsed worldwide. In the Netherlands, the competencies and profile of the generalist provider of palliative care has been described on all professional levels in nursing and medicine. However, there is no clear description of what specialized expertise in palliative care entails, whereas this is important in order for generalists to know who they can consult in complex palliative care situations and for timely referral of patients to palliative care specialists. OBJECTIVE: To gain insight in the roles and competencies attributed to palliative care specialists as opposed to generalists. METHODS: A scoping review was completed based on PRISMA-ScR guidelines to explore the international literature on the role and competence description of specialist and expert care professionals in palliative care. Databases Embase.com, Medline (Ovid), CINAHL (Ebsco) and Web of Science Core Collection were consulted. The thirty-nine included articles were independently screened, reviewed and charted. Thematic codes were attached based on two main outcomes roles and competencies. RESULTS: Five roles were identified for the palliative care specialist: care provider, care consultant, educator, researcher and advocate. Leadership qualities are found to be pivotal for every role. The roles were further specified with competencies that emerged from the analysis. The title, roles and competencies attributed to the palliative care specialist can mostly be applied to both medical and nursing professionals. DISCUSSION: The roles and competencies derived from this scoping review correspond well with the seven fields of competence for medical/nursing professionals in health care of the CanMEDS guide. A specialist is not only distinguished from a generalist on patient-related care activities but also on an encompassing level. Clarity on what it entails to be a specialist is important for improving education and training for specialists. CONCLUSION: This scoping review adds to our understanding of what roles and competencies define the palliative care specialist. This is important to strengthen the position of the specialist and their added value to generalists in a generalist-plus-specialist model.


Assuntos
Competência Clínica , Pessoal de Saúde , Cuidados Paliativos , Humanos , Cuidados Paliativos/normas , Cuidados Paliativos/métodos , Competência Clínica/normas , Países Baixos
14.
BMC Palliat Care ; 23(1): 178, 2024 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-39026303

RESUMO

BACKGROUND: Parenteral fluid (PF) therapy of patients in end-of-life (EOL) is controversial. The purpose of this study was to assess associations between PF, quality of the EOL care process and symptom burden in dying cancer patients, using a population-based approach. METHODS: This was a nationwide retrospective register study of all adult cancer deaths with documented information on PF in the last 24 h of life as reported to the Swedish Register of Palliative Care during a three-year period (n = 41,709). Prevalence and relief of symptoms during the last week of life as well as EOL care process quality indicators were assessed in relation to PF in those patients who had a documented decision to focus on EOL care (immediately dying, n = 23,112). Odds ratios were calculated, adjusting for place of death (hospital vs. non-hospital). RESULTS: PF was administered to 30.9% of immediately dying patients in hospitals compared to 6.5% outside of hospitals. PF was associated with a higher likelihood for breathlessness and nausea. In patients screened for EOL symptoms with a validated instrument, PF was inversely associated with the likelihood of complete relief of breathlessness, respiratory secretions, anxiety, nausea and pain. Several palliative care quality indicators were inversely associated with PF, including EOL conversations and prescriptions of injectable drugs as needed. These associations were more pronounced in hospitals. CONCLUSIONS: Parenteral fluid therapy in the last 24 h of life was associated with inferior quality of the EOL care process and with increased symptom burden in imminently dying cancer patients.


Assuntos
Hidratação , Neoplasias , Qualidade da Assistência à Saúde , Sistema de Registros , Assistência Terminal , Humanos , Neoplasias/terapia , Neoplasias/complicações , Masculino , Feminino , Sistema de Registros/estatística & dados numéricos , Idoso , Estudos Retrospectivos , Suécia , Pessoa de Meia-Idade , Assistência Terminal/métodos , Assistência Terminal/normas , Assistência Terminal/estatística & dados numéricos , Idoso de 80 Anos ou mais , Hidratação/métodos , Hidratação/normas , Qualidade da Assistência à Saúde/normas , Qualidade da Assistência à Saúde/estatística & dados numéricos , Adulto , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Carga de Sintomas
15.
Circulation ; 150(3): 190-202, 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39008557

RESUMO

BACKGROUND: The interstage period after discharge from stage 1 palliation carries high morbidity and mortality. The impact of social determinants of health on interstage outcomes is not well characterized. We assessed the relationship between childhood opportunity and acute interstage outcomes. METHODS: Infants discharged home after stage 1 palliation in the National Pediatric Quality Improvement Collaborative Phase II registry (2016-2022) were retrospectively reviewed. Zip code-level Childhood Opportunity Index (COI), a composite metric of 29 indicators across education, health and environment, and socioeconomic domains, was used to classify patients into 5 COI levels. Acute interstage outcomes included death or transplant listing, unplanned readmission, intensive care unit admission, unplanned catheterization, and reoperation. The association between COI level and acute interstage outcomes was assessed using logistic regression with sequential adjustment for potential confounders. RESULTS: The analysis cohort included 1837 patients from 69 centers. Birth weight (P<0.001) and proximity to a surgical center at birth (P=0.02) increased with COI level. Stage 1 length of stay decreased (P=0.001), and exclusive oral feeding rate at discharge increased (P<0.001), with higher COI level. More than 98% of patients in all COI levels were enrolled in home monitoring. Death or transplant listing occurred in 101 (5%) patients with unplanned readmission in 987 (53%), intensive care unit admission in 448 (24%), catheterization in 345 (19%), and reoperation in 83 (5%). There was no difference in the incidence or time to occurrence of any acute interstage outcome among COI levels in unadjusted or adjusted analysis. There was no interaction between race and ethnicity and childhood opportunity in acute interstage outcomes. CONCLUSIONS: Zip code COI level is associated with differences in preoperative risk factors and stage 1 palliation hospitalization characteristics. Acute interstage outcomes, although common across the spectrum of childhood opportunity, are not associated with COI level in an era of highly prevalent home monitoring programs. The role of home monitoring in mitigating disparities during the interstage period merits further investigation.


Assuntos
Melhoria de Qualidade , Humanos , Masculino , Feminino , Recém-Nascido , Lactente , Estudos Retrospectivos , Sistema de Registros , Cuidados Paliativos/normas , Resultado do Tratamento , Estados Unidos/epidemiologia , Determinantes Sociais da Saúde , Readmissão do Paciente , Alta do Paciente
16.
BMC Palliat Care ; 23(1): 159, 2024 Jun 25.
Artigo em Inglês | MEDLINE | ID: mdl-38918771

RESUMO

BACKGROUND: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. METHODS: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. RESULTS: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. CONCLUSIONS: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Estudos Transversais , Inglaterra , Masculino , Inquéritos e Questionários , Assistência Terminal/métodos , Assistência Terminal/normas , Assistência Terminal/psicologia , Feminino , Adulto , Pessoa de Meia-Idade , Pessoal de Saúde/psicologia , Pesquisadores/psicologia , Pesquisa Qualitativa
17.
J Hosp Palliat Nurs ; 26(4): 231-237, 2024 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-38885421

RESUMO

Nurses who care for patients with a left ventricular assist device (LVAD) are highly skilled clinicians who manage unique technological demands and complex complications within this specialized patient population. There is a demonstrated need and benefit for palliative care for patients with a LVAD, yet palliative consults are often underused, and the quality of consultation for these patients is poorly understood. Rarely, if at all, do nurses receive formal training on how to navigate the palliative care needs of patients with a LVAD, which includes preparedness planning, caregiver support, device/body image acceptance, and end-of-life care. In addition, there is a need for literature to address specifically how nurses in their role and scope of practice can improve palliative care for patients with a LVAD. The purpose of this article was to present recommendations to equip palliative care nurses to best serve the needs of patients with a LVAD, wherein they can partner with and advance their colleagues in cardiology to improve their delivery of primary palliative care.


Assuntos
Coração Auxiliar , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Coração Auxiliar/normas , Coração Auxiliar/tendências , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/normas , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Melhoria de Qualidade
18.
J Hosp Palliat Nurs ; 26(4): 195-204, 2024 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-38901025

RESUMO

Dyspnea is the most common and activity-limiting symptom for those with chronic obstructive pulmonary disease (COPD). Treatment is complex, palliative care (PC) dyspnea relief interventions are poorly understood, and PC remains underutilized in COPD despite national guidelines and recommendations. The purpose of this rapid review was to explore the concept of dyspnea and role of PC through the lens of providers, caregivers, and patients with COPD. A systematic approach for synthesis was used to identify 13 articles published between January 2018 and October 2023. Team members compared data via visualization and theme clustering to identify key conclusions describing operationalization of dyspnea, management, and PC implications. Dyspnea operationalization was challenging, with inconsistent measurement and terminology. Dyspnea was a significant burden in COPD and contributed to complexity of treatment. Opioids were used most often to treat dyspnea, but provider perspectives and biases can influence treatment decisions and perceptions of opioid therapy by the patient and caregiver. Evidence-based clinical practice guidelines and policies are needed to clarify the use of opioid therapy for dyspnea management to reduce stigmatization and barriers to treatment. Provider education should emphasize a multipronged approach to treatment of dyspnea in COPD with integration of PC early in the care continuum.


Assuntos
Dispneia , Cuidados Paliativos , Doença Pulmonar Obstrutiva Crônica , Humanos , Doença Pulmonar Obstrutiva Crônica/complicações , Doença Pulmonar Obstrutiva Crônica/terapia , Dispneia/terapia , Dispneia/etiologia , Dispneia/tratamento farmacológico , Cuidados Paliativos/métodos , Cuidados Paliativos/normas
19.
BMC Palliat Care ; 23(1): 141, 2024 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-38840116

RESUMO

CONTEXT: Palliative care (PC) in most African countries remains under-assessed. Benin has piloted the implementation of a set of indicators proposed by the WHO to measure PC development. OBJECTIVES: To examine the current status of PC in Benin. METHODS: A workshop with stakeholders was organized to assess the WHO indicators in the Beninese context. Indicators were rated based on relevance and feasibility, data sources were agreed upon, and a survey was adapted. Data were collected between March and May 2023. RESULTS: There is emerging community involvement in PC through the presence of patients' rights promoters, as well as a political commitment expressed in the National PC strategy, the inclusion of PC services in the list of basic health services, and an assigned national authority -within the Ministry of Health-responsible for PC. Although no PC-oriented research has been documented, the celebration of the National PC Conference represents the first step to ground PC delivery in evidence. The reported annual consumption of opioids is 0.18 (ME) milligrams per capita, 34% of healthcare establishments have essential medicines for pain and PC, and 16.5% of patients with palliative needs have access to oral morphine. To date, no medical or paramedical schools offer PC training, and there is no official specialization in palliative medicine for doctors. PC is provided by 11 specialist teams (0.08/100,000 inhabitants), none of which provides pediatric care. CONCLUSION: Despite growing political, professional, and community commitments to palliative care, there are challenges in education, research, essential medicines, and access to PC services.


Assuntos
Cuidados Paliativos , Organização Mundial da Saúde , Benin , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/tendências , Cuidados Paliativos/estatística & dados numéricos , Organização Mundial da Saúde/organização & administração , Inquéritos e Questionários , Indicadores de Qualidade em Assistência à Saúde/estatística & dados numéricos
20.
BMC Palliat Care ; 23(1): 151, 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38877509

RESUMO

BACKGROUND: The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework. METHODS: A multi-stage qualitative methodology involving four stages of data collection: (1) case study interviews, (2) focus groups, (3) interactive workshops, and (4) Evidence Cafés. From initial interviews, ongoing thematic data analysis informed the design and focus of subsequent stages as part of a process of knowledge transfer. RESULTS: A practical resource to support service provision and development was produced; a grab-and-go guide called "Small Steps, Big Visions". It focuses on the eight foundations in the Ambitions Framework, with additional guidance on collaboration and partnership working, and sharing learning. Each foundation is presented with a 'what' (definition), 'ask' (prompt questions), and 'examples in action' (drawn from case studies). CONCLUSIONS: Research can contribute to policy implementation to advance palliative and end of life care. The engagement and input of those responsible for implementation is key.


Assuntos
Grupos Focais , Cuidados Paliativos , Pesquisa Qualitativa , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Assistência Terminal/métodos , Assistência Terminal/normas , Grupos Focais/métodos , Inglaterra
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