Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 31
Filtrar
Mais filtros

Base de dados
Tipo de documento
Intervalo de ano de publicação
1.
Palliat Med ; 38(1): 131-139, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38087831

RESUMO

BACKGROUND: The fear of taking away hope hinders clinicians' willingness to share serious news with patients with advanced disease. Unrealistic illness expectations, on the other hand, can complicate decision making and end-of-life care outcomes. Exploration of the association between hope and illness expectations can support clinicians in better communication with their patients. AIM: The aim of this study was to explore whether realistic illness expectations are associated with reduced hope in people with advanced cancer. DESIGN: This is a cross-sectional secondary analysis of baseline data from a primary palliative care cluster-randomized trial CONNECT (data collected from July 2016 to October 2020). Hope was measured by Herth Hope Index. Illness expectations were measured by assessing patients' understanding of their treatment goals, life expectancy, and terminal illness acknowledgement. Multivariable regression was performed, adjusting for demographical and clinical confounders. SETTING/PARTICIPANTS: Adult patients with advanced solid cancers recruited across 17 oncology clinics. RESULTS: Data from 672 patients were included in the study, with mean age of 69.3 years (±10.2), 53.6% were female. Proportion of patients indicating realistic expectations varied based on which question was asked from 10% to 46%. Median level of hope was 39 (IQR = 36-43). Multivariate non-inferiority regression did not find any significant differences in hope between patients with more and less realistic illness expectations. CONCLUSIONS: Our results suggest that hope can be sustained while holding both realistic and unrealistic illness expectations. Communication about serious news should focus on clarifying the expectations as well as supporting people's hopes.


Assuntos
Neoplasias , Assistência Terminal , Adulto , Idoso , Feminino , Humanos , Masculino , Estudos Transversais , Esperança , Motivação , Neoplasias/terapia , Cuidados Paliativos/métodos , Pessoa de Meia-Idade , Ensaios Clínicos Controlados Aleatórios como Assunto
2.
BMC Palliat Care ; 23(1): 226, 2024 Sep 12.
Artigo em Inglês | MEDLINE | ID: mdl-39266990

RESUMO

BACKGROUND: Delivering serious news is usually challenging for healthcare professionals and the pandemic of COVID-19 and related restrictions brought additional challenges in this process. AIMS: To explore the experience of bereaved relatives with receiving serious news from healthcare professionals during the pandemic COVID-19. DESIGN: A qualitative study using thematic analysis and a codebook approach of data collected in semi-structured interviews with bereaved relatives. SETTING/PARTICIPANTS: Data were collected from July to August 2022 in person/via phone with bereaved relatives who lost their relatives during the pandemic (from March 2020 to March 2022). Participants were recruited using a convenience sample and snowball method through social media and through one university hospital palliative care unit that invited bereaved relatives of deceased patients treated at the unit to participate in this study. RESULTS: A total of 22 participants, consisting of 4 men and 18 women, were interviewed for this study. Most of the participants were sons or daughters of individuals who had died (5 grandchildren, 14 sons/daughters, 2 spouses, 1 great-niece). Six themes were identified: Burden caused by visit ban, Fear of COVID-19, Inappropriate behaviour and communication of healthcare professionals, High need for emotional support, Need for detailed and honest communication, Tendency to make excuses for mistakes and lapses by healthcare professionals. CONCLUSIONS: Delivering serious news during a pandemic was negatively influenced by a lack of contact with patients and a lack of support and empathetic communication with staff. Overcoming these circumstances can be achieved by frequent communication using various communication tools (such as videoconferences or phone calls), and maintaining empathy and honesty in the communication process.


Assuntos
Luto , COVID-19 , Família , Pandemias , Pesquisa Qualitativa , Humanos , COVID-19/psicologia , COVID-19/epidemiologia , Feminino , Masculino , Pessoa de Meia-Idade , Família/psicologia , Adulto , Idoso , SARS-CoV-2 , Entrevistas como Assunto/métodos , Comunicação , Apoio Social
3.
Age Ageing ; 52(3)2023 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-36861181

RESUMO

BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.


Assuntos
Planejamento Antecipado de Cuidados , Demência , Humanos , Cuidadores , Canadá , Casas de Saúde , Demência/diagnóstico , Demência/terapia
4.
BMC Palliat Care ; 22(1): 152, 2023 Oct 10.
Artigo em Inglês | MEDLINE | ID: mdl-37814302

RESUMO

BACKGROUND: Effective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Several barriers among patients, families and treating specialists have been identified in the context of initializing pediatric palliative care. The aim of the study was to assess the experience with initial pediatric palliative care consultations from perspectives of family caregivers and treating physicians with a special focus on two innovative approaches: attendance of the treating specialist and the opportunity for parents to give feedback on the written report from the consultation. METHODS: This was a qualitative study using semi-structured interviews with family caregivers of children with malignant and non-malignant disease and their treating specialists. Framework analysis was used to guide the data collection and data analysis. RESULTS: In total, 12 family caregivers and 17 treating specialists were interviewed. Four main thematic categories were identified: (1) expectations, (2) content and evaluation, (3) respect and support from the team and (4) consultation outcomes. Parents viewed the consultation as a unique opportunity to discuss difficult topics. They perceived the attendance of the treating specialist at the initial consultation as very important for facilitating communication. Treating specialists valued the possibility to learn more about psychosocial issues of the child and the family while attending the initial palliative care consultation. All participants perceived the written report from the consultation as useful for further medical decisions. Family members appreciated the chance to give feedback on the consultation report. CONCLUSIONS: Our study identified several clinically relevant issues that can help initialize pediatric palliative care and establish effective collaboration between families and PPCT and treating specialists. Supporting treating specialists in their ability to explain the role of palliative care is important in order to reduce the risk of misunderstanding or unrealistic expectations. Developing more specific expectations seems to be one of the ways to further increase the effectiveness of initial consultations. The results of the study can be especially helpful for the initial phase of implementing pediatric palliative care and initializing the process of setting up a collaborative relationship with palliative care teams in the hospital.


Assuntos
Cuidadores , Cuidados Paliativos , Criança , Humanos , Cuidados Paliativos/métodos , Família/psicologia , Pais/psicologia , Comunicação , Pesquisa Qualitativa
5.
J Gerontol Soc Work ; 66(7): 942-959, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37051657

RESUMO

A significant percentage of nursing home residents die in hospitals. The objective of this study is to explore the factors that influence decision-making about hospitalizations of nursing home residents in the Czech Republic that become terminal. A total of 27 semi-structured interviews with nurses and social workers registered with nursing homes, as well as general practitioners cooperating with nursing homes, were conducted. Data were analyzed using thematic analysis. Six themes of the factors influencing decision-making about hospitalizations were made: the options of the nursing home, the accessibility of medical decision-making, inadequate care planning, the age of the resident, fear of legal action, and making the decision to hospitalize. Terminality of life seems to have no impact on the decision of nurses about hospitalization. Terminal hospitalization seems to be the result of the limited options that nurses have in different nursing homes in terms of how to organize end-of-life care.


Assuntos
Clínicos Gerais , Enfermeiras e Enfermeiros , Humanos , Assistentes Sociais , Hospitalização , Casas de Saúde , Tomada de Decisões
6.
Qual Life Res ; 31(8): 2367-2374, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35119564

RESUMO

PURPOSE: Despite the current guidelines supporting open communication about serious news, the evidence about the impact of prognostic awareness on the quality of life in cancer patients is not clear. The aim of this study was to assess the association between quality of life and prognostic awareness in patients with advanced cancer. METHODS: This was a cross-sectional study which involved patients (n = 129) with incurable advanced cancer (estimated by oncologist using 12-month surprise question). Data were collected at oncology departments at 3 hospitals using structured interview in which patients were asked about their quality of life (using Integrated Palliative Outcome Scale-IPOS and a single-item global measure), prognostic awareness, information needs and demographics. RESULTS: Only 16% of the sample was completely aware of prognosis and 57% was partially aware. Accurate prognostic awareness was significantly associated (p = 0.02) with lower level of quality of life between (when measured by both the IPOS and the single-item scale) patients with accurate prognostic awareness (M = 37.1; 10.4) and partially aware (M = 31.9; 9.1) and unaware patients (M = 30; 7.4). Detailed analysis showed that significant difference between groups was found only for physical symptoms subscales (p = 0.002), not for emotional and communication subscales. CONCLUSION: Prognostic awareness was found to be negatively associated with physical domain of quality of life, but not with emotional and communication domains. More research is needed on personality factors that might influence the development of prognostic awareness and quality of life.


Assuntos
Neoplasias , Qualidade de Vida , Estudos Transversais , Humanos , Neoplasias/psicologia , Cuidados Paliativos , Prognóstico , Qualidade de Vida/psicologia
7.
BMC Geriatr ; 22(1): 822, 2022 10 26.
Artigo em Inglês | MEDLINE | ID: mdl-36289458

RESUMO

BACKGROUND: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. METHODS: This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. DISCUSSION: The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia.


Assuntos
Planejamento Antecipado de Cuidados , Demência , Assistência Terminal , Humanos , Cuidadores , Demência/terapia , Casas de Saúde , Assistência Terminal/métodos
8.
Psychooncology ; 30(9): 1449-1456, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-33864323

RESUMO

OBJECTIVE: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. METHODS: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12-month surprised question). Structured interviews, including tools to measure prognostic awareness, health information needs, and demographics were conducted face to face or via phone three times over 9 months. Forty-four patients completed all three phases of data collection. RESULTS: Only 16% of patients reported accurate prognostic awareness, 58% being partially aware. Prognostic awareness of both patients and family caregivers remained stable over the course of the study, with only small non-significant changes. Gender, education, type of cancer, spirituality or health information needs were not associated with the level of prognostic awareness. Family caregivers reported more accurate prognostic awareness, which was not associated with patients' own prognostic awareness (agreement rate 59%, weighted kappa 0.348, CI = 0.185-0.510). CONCLUSIONS: Prognostic awareness appears to be a stable concept over the course of the illness. Clinicians must focus on the initial patients' understanding of the disease and be able to communicate the prognostic information effectively from the early stages of patients' trajectory.


Assuntos
Cuidadores , Neoplasias , Estudos de Coortes , Humanos , Estudos Longitudinais , Neoplasias/terapia , Prognóstico
9.
BMC Palliat Care ; 20(1): 80, 2021 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-34090400

RESUMO

BACKGROUND: Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation. METHOD: This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life. The second dataset used a longitudinal design with structured interviews on prognostic awareness. In both studies, participants evaluated their experience on a 5-point Likert scale and specified their motivation in an open-ended question. Data were collected in 6 hospitals in the Czech Republic with patients with advanced disease and life expectancy less than 1 year and their relatives. Data were analysed using non-parametric tests and thematic analysis. RESULTS: First dataset consisted of 167 patients and 102 relatives, and second dataset consisted of 135 patients and 92 relatives (in total, 496 respondents). Results were similar in both datasets, with half of the sample (53%, 48%) scoring neutral, and over 30% of the sample identified their experience as interesting. The most significant factors associated with the evaluation were religiosity (p = 0.001) and the type of diagnosis (p = 0.04). Motivation for participation was to improve care, support research, express own opinion, opportunity to talk and trusting relationship. CONCLUSIONS: Patients with advanced disease and relatives do not mind participating in palliative care research, and it can be even a positive experience for them.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Estudos Transversais , Família , Humanos , Pesquisa Qualitativa , Inquéritos e Questionários
10.
Psychooncology ; 29(6): 990-1003, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32285580

RESUMO

OBJECTIVES: Prognostic awareness relates to patients' capacity to understand their prognosis and the likely illness trajectory. Based on the current evidence, accurate PA is associated with decrease in uncertainty, depresivity, and anxiety and with increase in quality of life. However, other studies found also negative associations of PA and quality of life and mental health. This systematic review synthesizes the available literature on factors associated with accurate prognostic awareness in patients with cancer. METHODS: Four databases were systematically searched for studies assessing prognostic awareness in patients with cancer. In these studies, we looked for factors positively or negatively associated with prognostic awareness. Included studies were critically appraised for methodological quality. RESULTS: We screened 28 078 studies and included 70. In these studies, 102 factors were found to be related to prognostic awareness positively or negatively. Identified factors were divided into seven groups: demographic factors, factors related to coping, health condition factors, psychological factors, factors associated with end-of-life care, factors related to communication, and factors related to relatives. Prognostic awareness differs according to age, personality, communication with doctor, disease stage, or being outpatient. For some factors such as depression, anxiety, or quality of life, higher level of these factors was found to be associated with accurate and inaccurate prognostic awareness. CONCLUSIONS: Prognostic awareness is a complex phenomenon associated with various positive and negative associations for patients with cancer. Clinicians must consider individual preferences and values of patients and their families when discussing prognosis and must be prepared for potential adverse outcomes.


Assuntos
Cuidados Paliativos na Terminalidade da Vida/psicologia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Assistência Terminal/psicologia , Adaptação Psicológica , Adulto , Ansiedade/psicologia , Conscientização , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico
11.
BMC Palliat Care ; 19(1): 39, 2020 Mar 25.
Artigo em Inglês | MEDLINE | ID: mdl-32213172

RESUMO

BACKGROUND: Outcome measurement is an essential part of the evaluation of palliative care and the measurements need to be reliable, valid and adapted to the culture in which they are used. The Integrated Palliative Outcome Scale (IPOS) is a widely used tool for assessing personal-level outcomes in palliative care. The aim of this study was to provide Czech version of IPOS and assess its psychometric properties. METHODS: Patients receiving palliative care in hospice or hospitals completed the IPOS. The reliability of Czech IPOS was tested with Cronbach alpha (for internal consistency), the intraclass correlation coefficient for total IPOS score and weighted Kappa (for test-retest reliability of individual items). Factor analysis was used for elucidating the construct (Exploratory Factor Analysis). Convergent validity was tested with correlation analysis (Spearman correlation) in a part of the sample, who completed also the Edmonton Symptom Assessment System (ESAS) and the Palliative Performance Scale (PPS). RESULTS: The sample consisted of 140 patients (mean age 72; 90 women; 81% oncological disease). The Cronbach alpha was 0.789; intraclass correlation was 0.88. The correlations of IPOS with ESAS was R = 0.4 and PPS R = - 0.2. Exploratory factor analysis revealed a 2-factor solution on our data. The first factor covers emotional and information needs and the second factor covers physical symptoms. CONCLUSION: Czech IPOS has very good reliability regarding both internal consistency and test-retest reliability. Together with an item analysis results, we can conclude that the Czech adaptation of the tool was successful. The convergent validity needs to be assessed on the larger sample and the proposed 2-factor internal structure of the questionnaire has to be confirmed by using CFA.


Assuntos
Avaliação de Resultados em Cuidados de Saúde/normas , Cuidados Paliativos/normas , Psicometria/normas , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , República Tcheca , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde/estatística & dados numéricos , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Psicometria/instrumentação , Psicometria/métodos , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e Questionários
12.
Eur J Pediatr ; 176(3): 327-335, 2017 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-28070671

RESUMO

Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys. CONCLUSION: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. • In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.


Assuntos
Doença Crônica/mortalidade , Morte , Características de Residência , Assistência Terminal/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , Adolescente , Canadá , Causas de Morte , Criança , Pré-Escolar , Comparação Transcultural , Atestado de Óbito , Europa (Continente) , Feminino , Mortalidade Hospitalar , Humanos , Lactente , Modelos Logísticos , Masculino , México , Nova Zelândia , Razão de Chances , República da Coreia , Distribuição por Sexo , Estados Unidos
13.
Palliat Med ; 31(6): 526-536, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-27683475

RESUMO

BACKGROUND: To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed. AIM: To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries. DESIGN: This is a cross-sectional study using death certificate data. SETTING/PARTICIPANTS: All adults (⩾18 years) who died in 2008 in Belgium, Czech Republic, France, Hungary, Italy, Spain (Andalusia, 2010), Sweden, Canada, the United States (2007), Korea, Mexico, and New Zealand ( N = 4,908,114). Underlying causes of death were used to apply three estimation methods developed by Rosenwax et al., the French National Observatory on End-of-Life Care, and Murtagh et al., respectively. RESULTS: The proportion of individuals who died from diseases that indicate palliative care needs at the end of life ranged from 38% to 74%. We found important cross-country variation: the population potentially in need of palliative care was lower in Mexico (24%-58%) than in the United States (41%-76%) and varied from 31%-83% in Hungary to 42%-79% in Spain. Irrespective of the estimation methods, female sex and higher age were independently associated with the likelihood of being in need of palliative care near the end of life. Home and nursing home were the two places of deaths with the highest prevalence of palliative care needs. CONCLUSION: These estimations of the size of the population potentially in need of palliative care provide robust indications of the challenge countries are facing if they want to seriously address palliative care needs at the population level.


Assuntos
Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Curva ROC , Assistência Terminal/estatística & dados numéricos , Adulto Jovem
14.
Soc Psychiatry Psychiatr Epidemiol ; 51(1): 101-6, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-26577917

RESUMO

PURPOSE: The places of death for people who died of suicide were compared across eight countries and socio-demographic factors associated with home suicide deaths identified. METHODS: Death certificate data were analyzed; using multivariable binary logistic regression to determine associations. RESULTS: National suicide death rates ranged from 1.4 % (Mexico) to 6.4 % (South Korea). The proportion of suicide deaths occurring at home was high, ranging from 29.9 % (South Korea) to 65.8 % (Belgium). Being older, female, widowed/separated, highly educated and living in an urban area were risk factors for home suicide. CONCLUSIONS: Home suicide deaths need specific attention in prevention programs.


Assuntos
Atestado de Óbito , Saúde Global/estatística & dados numéricos , Suicídio/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Causas de Morte , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Adulto Jovem
15.
Cas Lek Cesk ; 155(8): 445-450, 2016.
Artigo em Tcheco | MEDLINE | ID: mdl-28098477

RESUMO

In the Czech Republic more than 70,000 patients with chronic incurable diseases need palliative care each year. In 50,000 this need is manageable in the context of general palliative care, 20,000 patients would greatly benefited from specialized palliative care. Most chronically ill patients (> 60 %) died in acute or post acute inpatient health care facilities. Here s the availability and quality of palliative care varies substantially. Inpatient hospices provide end of life palliative care to less than 3000 patients each year. Outpatient and mobile specialized palliative care services are available only to a few hundreds of patients.In the year 2016 palliative care at the appropriate professional level ("state of art") is not a generally available and guaranteed within Czech health care and social system. We perceive an urgent need for the systematic development of general and specialized palliative care at the level of education, healthcare organization and the development of new health and social services.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Assistência Terminal , Assistência Ambulatorial , Doença Crônica , República Tcheca , Acessibilidade aos Serviços de Saúde , Hospitais para Doentes Terminais , Hospitalização , Humanos
16.
BMC Palliat Care ; 14: 28, 2015 May 20.
Artigo em Inglês | MEDLINE | ID: mdl-25990567

RESUMO

BACKGROUND: Most people prefer to receive end-of-life care in familiar surroundings rather than in hospital. This study examines variation in place of death for people dying from Parkinson's disease (PD) across 11 European and non-European countries. METHODS: Using death certificate data of 2008 for Belgium, France, Italy, Hungary, Czech Republic, New Zealand, USA, Canada, Mexico, South Korea and Spain for all deaths with PD as an underlying cause (ICD-10 code: G20) cross-national differences in place of death were examined. Associations between place of death and patient socio-demographic and regional characteristics were evaluated using multivariable binary logistic regression analyses. RESULTS: The proportion of deaths in hospital ranged from 17% in the USA to 75% in South Korea. Hospital was the most prevalent place of death in France (40%), Hungary (60%) and South Korea; nursing home in New Zealand (71%), Belgium (52%), USA (50%), Canada (48%) and Czech Republic (44%); home in Mexico (73%), Italy (51%) and Spain (46%). The chances of dying in hospital were consistently higher for men (Belgium, France, Italy, USA, Canada), those younger than 80 years (Belgium, France, Italy, USA, Mexico), and those living in areas with a higher provision of hospital beds (Italy, USA). CONCLUSIONS: In several countries a substantial proportion of deaths from PD occurs in hospitals, although this may not be the most optimal place of terminal care and death. The wide variation between countries in the proportion of deaths from PD occurring in hospital indicates a potential for many countries to reduce these proportions.


Assuntos
Morte , Doença de Parkinson/mortalidade , Assistência Terminal/estatística & dados numéricos , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Causas de Morte , Comparação Transcultural , Atestado de Óbito , Feminino , Número de Leitos em Hospital , Hospitais/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Casas de Saúde/estatística & dados numéricos , Características de Residência , Fatores Sexuais , Fatores Socioeconômicos
17.
BMC Palliat Care ; 13(1): 13, 2014 Mar 20.
Artigo em Inglês | MEDLINE | ID: mdl-24650214

RESUMO

BACKGROUND: Place of death represents an important indicator for end-of-life care policy making and is related to the quality of life of patients and their families. The aim of the paper is to analyse the place of death in the Czech Republic and Slovakia in 2011. Research questions were focused on factors influencing the place of death and specifically the likelihood of dying at home. METHODS: Whole population data from death certificates for all deaths in the Czech Republic and Slovakia in 2011 were used for bivariate and multivariate analyses. Separate analysis using binary logistic regression was conducted for subpopulation of patients who died from chronic conditions. RESULTS: The majority of population in both countries died in hospitals (58.4% the Czech Republic, 54.8% Slovakia), less than one-third died at home. In case of chronic conditions, death at home was significantly associated with underlying cause of death (cancer and heart failure), being male, age (older than 85, Slovakia only) and higher education (the Czech Republic only). Cancer and heart failure patients had higher chances to die at home than other chronic conditions. CONCLUSIONS: Czech and Slovak patients with chronic conditions are more likely to die in hospitals than in some other European Union member countries. This finding should be addressed by policy makers in promoting home hospice care services and education in palliative care for staff in nursing homes and other end-of-life settings.

18.
Eur J Emerg Med ; 31(3): 195-200, 2024 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-38215271

RESUMO

BACKGROUND: Although emergency medical service is focused on providing acute prehospital treatment, it is often used by terminally ill patients and their informal caregivers during the last days of patient's life. Little is known about why they decide to use the emergency medical services. STUDY OBJECTIVE: The aim was to explore informal caregivers' motivation and decision-making process for calling emergency medical services for their terminally ill loved ones. METHODS: This study used a qualitative design. Data were collected by semi-structured interviews with 31 relatives of 30 patients who used the emergency medical services. Data were analyzed with NVivo software by utilizing principles of thematic analysis. RESULTS: Through the analysis, four distinct themes emerged: (1) limited availability of support from health care services; (2) insufficient planning of care; (3) decline in the health of the patient and (4) being lost and desperate. CONCLUSION: For informal caregivers, emergency medical services represented an important source of support while caring for their terminally ill loved ones due to the limited availability of other sources of help, including a lack of specialist palliative care providers. Additionally, informal caregivers had limited knowledge of the dying process and used emergency medical services for professional advice.


Assuntos
Cuidadores , Serviços Médicos de Emergência , Pesquisa Qualitativa , Doente Terminal , Humanos , Cuidadores/psicologia , Masculino , Feminino , Doente Terminal/psicologia , Pessoa de Meia-Idade , Idoso , Adulto , Assistência Terminal/psicologia , Tomada de Decisões , Entrevistas como Assunto , Idoso de 80 Anos ou mais
19.
J Palliat Med ; 27(3): 345-357, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-38354282

RESUMO

Background: Leadership competencies are essential for the future development of the field of palliative and hospice care. However, a consensus on the core competencies of good leadership is not yet available. Objective: To elicit consensus on core leadership competencies in palliative care. Design: Based on a literature review, a list of 119 specific leadership competencies was compiled. Subsequently, a Delphi technique used three online survey rounds and a final expert consultation (the board of the European Association for Palliative Care [EAPC]) to assess the importance of these competencies. Setting/Participants: International experts in leadership in palliative care were identified from an online search and EAPC networks. Results: From the 194 international multiprofessional experts invited to participate, 99/78/64 took part in the 3 rounds. One hundred fifteen items from eight domains of leadership (research, advocacy and media, communication, teamwork, project management, organizational learning and sustainability, leading change, and personal traits) reached consensus and were deemed as important. Conclusions: The eight domains provide evidence for teaching of leadership competencies in palliative care. We recommend that exploring, identifying, and integrating leadership competencies in palliative care are given more attention in educational curricula and in training interventions.


Assuntos
Liderança , Cuidados Paliativos , Humanos , Técnica Delphi , Comunicação , Consenso
20.
Gerontologist ; 64(6)2024 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-38349015

RESUMO

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.


Assuntos
Planejamento Antecipado de Cuidados , Cuidadores , Demência , Casas de Saúde , Humanos , Casas de Saúde/organização & administração , Cuidadores/psicologia , Assistência Terminal , República Tcheca , Canadá , Países Baixos , Itália , Reino Unido , Masculino , Idoso , Tomada de Decisões , Feminino , Irlanda
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA