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1.
Soc Sci Med ; 357: 117186, 2024 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-39121566

RESUMO

The expansion of hospice care worldwide has been received differently by medical communities in different societies. Nonetheless, existing efforts to explain how culture affects the reception of hospice care are inadequate. On the basis of fieldwork conducted in Chinese medical institutions and care facilities between 2017 and 2022, this paper draws on a theoretical framework that distinguishes between declarative culture and nondeclarative culture at the personal level to explain the discrepancies between healthcare professionals' beliefs regarding the value of hospice care and their daily healthcare practice. Moreover, this paper uses the concept of cultural scaffolding to demonstrate that the culture of hospice care and the culture of medical institutions are not separate, independent entities but rather evolve together to produce new and local forms of hospice care in the Chinese context. This analysis helps clarify the obstacles and opportunities associated with hospice care in China and contributes to existing research on the reception of hospice care worldwide.

2.
Artigo em Inglês | MEDLINE | ID: mdl-39181701

RESUMO

BACKGROUND: Palliative care (PC) refers to providing patients with physical, psychological, mental, and other care and humanistic care services in a multidisciplinary collaborative mode with end-of-stage patients and family members as the centre. The PC screening tool (PCST) was developed to identify individuals who may benefit from PC services and is widely assumed to improve patient outcomes. OBJECTIVES: The purpose is to understand which specific PCST has been applied to clinical patients and to analyse and summarise the impact of using these tools on patient outcomes. METHODS: A systematic review of articles published on PCST was performed in PubMed, Web of Science, CINAHL and MEDLINE in January 2024. All original research articles on PCST fulfilling the following eligibility criteria were included (1) utilisation and evaluation of tools was the primary objective and (2) at least one patient outcome was reported. RESULTS: A total of 22 studies were included, 12 studies used a prospective study, 4 studies used a non-RCT and 6 studies used an RCT. The studies were heterogeneous regarding study characteristics, especially patient outcomes. In total, 24 different patient outcomes were measured, of which 16 outcomes measured in 12 studies significantly improved. CONCLUSIONS: We found that the majority of included studies reported that implementing PCST can improve patient outcomes to some extent, especially when used to improve in reducing hospitalisation time and patient readmission rate. However, there is a lack of high-quality research on this widely used screening tool.

3.
Support Care Cancer ; 32(9): 606, 2024 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-39168868

RESUMO

PURPOSE: Improving end-of-life (EOL) quality for terminally ill cancer patients is crucial. However, associations between hospice/palliative care and EOL quality, as perceived by patients, are underreported. We aimed to examine the impact of palliative care consultative services on the EOL quality during cancer patients' last six months. METHODS: In this prospective, longitudinal study, 174 cancer patients were divided into a palliative care consultative services group (n = 65) or a non palliative care consultative services group (n = 109). The impact of palliative care consultative services on EOL quality, assessed using the Quality of Dying and Death (QODD) scale at the first and last assessments within the patients' last six months, was analyzed by linear regression with generalized estimating equations, adjusting for covariates. RESULTS: Cancer patients received palliative care consultative services a median of 34.0 days before death. There were significant main effects of groups, indicating that patients receiving palliative care consultative services had better QODD total scores (ß [95% confidence interval] = 2.12 [0.32,3.93], p = .021), death preparation (3.80 [1.71,5.89], p < .001), and treatment preferences than the reference group (3.27 [0.90,5.64], p = .007). No group differences were found in other dimensions, including symptom and personal care, whole person concern, and time with family. CONCLUSION: Palliative care consultative services significantly improved cancer patients' perceptions of death preparation, treatment preferences, and the QODD total score. Therefore, healthcare professionals should offer palliative care consultative services to cancer patients, initiate early referrals for such care, and implement effective and individualized interventions to enhance EOL quality.


Assuntos
Neoplasias , Cuidados Paliativos , Qualidade de Vida , Encaminhamento e Consulta , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Masculino , Feminino , Neoplasias/terapia , Estudos Prospectivos , Pessoa de Meia-Idade , Idoso , Assistência Terminal/métodos , Estudos Longitudinais , Idoso de 80 Anos ou mais , Adulto
4.
Am J Hosp Palliat Care ; : 10499091241273403, 2024 Aug 14.
Artigo em Inglês | MEDLINE | ID: mdl-39141006

RESUMO

BACKGROUND: Patients from underrepresented racial and ethnic groups (URGs) in the United States (US) experience disparities in accessing palliative care (PC) at the end of life (EOL). Additionally, little effort has been made to understand their experiences with PC. OBJECTIVES: To identify and synthesize existing literature on PC experiences among adults from URGs in nursing homes, community settings, and hospitals in the US. METHODS: Guided by the Joanna Briggs Institute methodological recommendation and Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews, we conducted a scoping review. We searched PubMed, EMBASE, CINAHL, Scopus, and ProQuest Dissertations & Theses Global from inception to January 2024. RESULTS: We included five studies representing Hispanic/Latino, American Indian, African/Black American, and Chinese individuals. Data were organized around two themes: navigating PC pathway and choices and practices during PC. Navigating PC pathway theme highlights that despite the several barriers URGs face when accessing PC, they seek PC services due to their limited formal family assistance in managing their chronic conditions and pain. The choices and practices during PC theme emphasize the roles URG family members play in EOL care, the patient's care preferences, and their spiritual practices and beliefs related to EOL care. CONCLUSION: This scoping review reveals limited literature about URG experiences with PC and highlights the need for more studies to focus on making PC services more accessible to URGs and providing culturally sensitive care to meet the needs of the diverse growing US population.

5.
Artigo em Inglês | MEDLINE | ID: mdl-39152042

RESUMO

Background: The coronavirus disease (COVID-19) pandemic has caused significant global mortality and left a substantial number of bereaved individuals in its wake while reshaping healthcare delivery and profoundly affecting families coping with loss. During the pandemic, public health measures and the fear of getting COVID have reshaped grieving for families, adding emotional layers and complexities. This was further compounded by bereavement challenges, including changes to gatherings that have altered social norms and limited families in honoring loved ones, causing further distressing. Purpose: To elucidate experiences of families who had a hospitalized terminally ill family member during the COVID-19 pandemic and identify themes from the existing literature that can inform clinical practice related to how healthcare providers care for individuals and their families during palliative care going forward. Methods: This scoping review delved into qualitative studies sourced from peer-reviewed literature found in PubMed, CINAHL, and MEDLINE databases. Results: A thorough search yielded 298 articles, of which 10 were included in the present review. Four themes were identified: the importance of communication, the challenges and effects of separation from loved ones, changed rituals and bereavement, and access to services and support. Implications for Practice: The restrictions and fear imposed by the COVID-19 pandemic has significantly altered patient and family care dynamics, disrupting customary face-to-face visits and increasing emotional strain for families, while highlighting the necessity for personalized end-of-life care. Integrating supportive frameworks and utilizing telehealth platforms or hybrid care models will be crucial in addressing the complexities of grief and loss experienced by patients, families, and caregivers during and after the pandemic.

6.
Artigo em Inglês | MEDLINE | ID: mdl-39153840

RESUMO

BACKGROUND: Homeless adults experience a significant symptom burden when living with a life-limiting illness and nearing the end of life. This increases the inequalities that homeless adults face while coping with a loss of rootedness in the world. There is a lack of palliative and end of life care provision specifically adapted to meet their needs, exacerbating their illness and worsening the quality of their remaining life. AIM: To identify interventions and models of care used to address the palliative and end of life care needs of homeless adults, and to determine their effectiveness. METHODS: Standard systematic reviewing methods were followed, searching from 1 January 2000 the databases: Ovid MEDLINE, EMBASE, SCOPUS, Web of Science, CINAHL and PsycInfo. Results were reported following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and described using a narrative synthesis. Study quality was assessed using Hawker's Quality Assessment Tool. RESULTS: Nine studies primarily focused on: education and palliative training for support staff; advance care planning; a social model for hospice care; and the creation of new roles to provide extra support to homeless adults through health navigators, homeless champions or palliative outreach teams. The voices of those experiencing homelessness were rarely included. CONCLUSION: We identified key components of care to optimise the support for homeless adults needing palliative and end of life care: advocacy; multidisciplinary working; professional education; and care in the community. Future research must include the perspectives of those who are homeless.

7.
Stud Health Technol Inform ; 316: 471-472, 2024 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-39176779

RESUMO

Predicting lifespan much more accurately is important for the palliative care team and the families they accompany. However, the way physicians estimate survival time has a gap between the real conditions. This is the first study to use a senseless wearable sensor to collect electrocardiograms from hospice care patients and explore the final moments of patients' lives by analyzing heart rate variability.


Assuntos
Frequência Cardíaca , Dispositivos Eletrônicos Vestíveis , Humanos , Frequência Cardíaca/fisiologia , Eletrocardiografia Ambulatorial/instrumentação , Masculino , Assistência Terminal , Feminino , Reprodutibilidade dos Testes , Idoso , Sensibilidade e Especificidade , Desenho de Equipamento , Análise de Falha de Equipamento , Eletrocardiografia , Pessoa de Meia-Idade
8.
Stud Health Technol Inform ; 316: 66-67, 2024 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-39176676

RESUMO

The reuse of real-world symptom monitoring data is essential in improving the quality of hospice care. A framework for achieving this is a Learning Health System, in which the development of a well-defined dataset is essential. This paper discusses the challenges in the design of a comprehensive dataset, focusing on variations in two electronic health record systems and divergent care processes.


Assuntos
Registros Eletrônicos de Saúde , Cuidados Paliativos na Terminalidade da Vida , Sistema de Aprendizagem em Saúde , Humanos
9.
Palliat Care Soc Pract ; 18: 26323524241263109, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39045294

RESUMO

Background: Palliative care affords numerous benefits, including improvements in symptom management, mental health, and quality of life, financial savings, and decreased mortality. Yet palliative care is poorly understood and often erroneously viewed as end-of-life care and hospice. Barriers for better education of the public about palliative care and its benefits include shortage of healthcare providers specializing in palliative care and generalist clinicians' lack of knowledge and confidence to discuss this topic and time constraints in busy clinical settings. Objectives: Explore and compare the knowledge, values, and practices of community-dwelling adults 19 years and older from Nebraska about serious illness and end-of-life healthcare options. Design: Secondary analysis of cross-sectional data collected in 2022 of 635 adults. We examined the fifth wave (2022) of a multiyear survey focusing on exploring Nebraskans' understanding of and preferences related to end-of-life care planning. Methods: Descriptive statistics and chi-square tests to compare results between groups. Univariable and multivariable logistic regression analyses examine associations of variables as to knowledge of hospice and palliative care. Results: While 50% of respondents had heard a little or a lot about palliative care, 64% either did not know or were not sure of the difference between palliative care and hospice. Those who reported being in poor health were not more likely to know the difference between palliative care and hospice compared to those reporting being in fair, good, or excellent health. Conclusion: This study offers insight into the knowledge and attitudes about palliative care among community-dwelling adults, 19 years and older living in Nebraska. More effort is needed to communicate what palliative care is, who can receive help from it, and why it is not only for people at end of life. Advance care planning discussions can be useful in offering clarity.

10.
Cancer Res Treat ; 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38965926

RESUMO

Purpose: In Korea, the act on hospice and palliative care and decisions on life-sustaining treatment (LST) was implemented on February 4, 2018. We aimed to investigate relevant factors and clinical changes associated with LST decisions after law enforcement. Materials and Methods: This single-center retrospective study included patients who completed LST documents using legal forms at Asan Medical Center from February 5, 2018, to June 30, 2020. Results: 5896 patients completed LST documents, of which 2704 (45.8%) signed the documents in person, while family members of 3,192 (54%) wrote the documents on behalf of the patients. Comparing first year and following year of implementation of the act, the self-documentation rate increased (43.9% to 47.2%, p=0.014). Moreover, the number of LST decisions made during or after ICU admission decreased (37.8% vs. 35.2%, p=0.045), and the completion rate of LST documents during chemotherapy increased (6.6% vs. 8.9%, p=0.001). In multivariate analysis, age < 65 (OR, 1.724; 95% CI, 1.538-1.933; p<0.001), unmarried status (OR, 1.309; 95% CI, 1.097-1.561; p=0.003), palliative care consultation (OR, 1.538; 95% CI, 1.340-1.765; p<0.001), malignancy (OR, 1.864; 95% CI, 1.628-2.133; p<0.001), and changes in timing on the first year versus following year (OR, 1.124, 95% CI, 1.003-1.260, p=0.045) were related to a higher self-documentation rate. Conclusion: Age < 65, unmarried status, malignancy, and referral to a palliative care team were associated with patients making LST decisions themselves. Furthermore, the subject and timing of LST decisions have changed with the LST act.

11.
J Palliat Med ; 2024 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-39023051

RESUMO

Background and Purpose: Patients with advanced noncancer diseases or advanced cancer diseases may experience similar symptom burdens during the end of their lives. This study aimed to evaluate the differences in receiving hospice care service and in receiving aggressive end-of-life care between patients who died of cancer diseases and those who died of noncancer diseases. Methods: This cross-sectional population-based study used data from the Taiwan National Health Insurance Research Database. Subjects who died of cancers or noncancer diseases from 2010 through 2019 were analyzed to identify the information on patient's characteristics, receipt of hospice care service, receipt of cardiopulmonary resuscitation (CPR) during the last hospitalization, and receipt of airway support interventions during the last hospitalization. The independent effects of various characteristics on the receipt of hospice care, CPR during the last hospitalization, and airway support interventions during the last hospitalization were evaluated using multivariate logistic regressions. Results: A total of 587,490 patients were included, of which 434,142 died of cancers and 153,348 died of noncancer diseases. There were significant trends of increase in receiving hospice care service and significant trends of decrease in receiving CPR or airway support interventions during the last hospitalization in both patients who died of cancers and those who died of noncancer diseases. Compared with patients who died of cancers, those who died of noncancer diseases were less likely to receive hospice care service (adjusted odds ratio [AOR]: 0.087; 95% confidence interval [CI]: 0.085-0.089) and had a higher risk of receiving CPR (AOR: 3.610; 95% CI: 3.521-3.704) or airway support interventions during the last hospitalization (AOR: 3.086; 95% CI: 3.021-3.165). Conclusions: Hospice care service should be promoted for all patients with end-stage diseases especially those with noncancer diseases.

12.
Artigo em Inglês | MEDLINE | ID: mdl-38955459

RESUMO

OBJECTIVES: Hospices provide a range of services including inpatient units (IPUs) and care in people's homes. 40 000-50 000 patients use IPUs in the UK per year. Little published data exist on IPU models. This paper explores the structure and funding of IPU across the Southwest (SW) of England (population 5.6 million), alongside impact of COVID-19. METHODS: An electronic survey of all 13 IPUs. Data collated, tabulated and compared with national commissioning guidance. RESULTS: A 92% survey response rate revealed large variation in bed availability per 250 000 of SW population: 2.5-18.2. Referrals and admissions per IPU bed per year ranged from 16 to 38.2 (or 39-127 per 100 000 population) and 21.7 (mean), respectively. There was significant workforce variability: 1.3-12.7 nurses per 7.5 hospice beds, 1.2-7.2 consultants per 20 hospice beds, varying multidisciplinary team members with many unfilled posts. National Health Service (NHS) funding ranged from 10% to 75% of total costs. During COVID-19, 4 of 12 hospices reduced bed capacity, while half described increased integration with other teams outside of the hospice. CONCLUSION: There is significant regional variability suggesting inequality in hospice bed availability per 250 000 population. There is also considerable variability in workforce, alongside the proportion of NHS funding. Such variability implies little is known about the optimal IPU model. This provides new meaningful information about the structure and funding of hospices, with further research needed to consider these differences on the impact on patient and family experiences and outcomes. The sustainability and opportunities of integration and collaboration across care settings are also paramount.

13.
Cureus ; 16(6): e63212, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-39070429

RESUMO

INTRODUCTION: The Uniform Determination of Death Act (UDDA) ensures that individuals with irreversible cessation of circulatory, respiratory, or brain functions receive timely palliative care. Our research has focused on identifying disparities in mortality among individuals with Down syndrome (DS) based on gender, age, racial groups, and geographic regions within the United States over 22 years. This study aims to analyze differences in the location of death, including hospitals, nursing homes, hospice care facilities, and unspecified locations, considering demographic and regional variables. METHODOLOGY: Utilizing a cross-sectional observational study design, we extracted data from the Centers for Disease Control and Prevention's Wide-ranging Online Data for Epidemiologic Research (CDC-WONDER) database, specifically targeting deaths coded under the International Classification of Diseases, 11th Revision (ICD-11) code "Q-90." This analysis, covering 1999 to 2020, segmented the data by age, gender, race, and United States Census regions. Death locations were categorized into home/hospice, medical facilities, and nursing/other facilities. Data analysis was conducted using Microsoft Excel, and the Autoregressive Integrated Moving Average (ARIMA) model was applied for statistical assessments. RESULTS: Our analysis included 22604 deaths related to DS, as recorded in the CDC-WONDER database from 1999 to 2020. The majority of these deaths occurred in medical or nursing facilities, with home or hospice deaths accounting for 6106 cases and other locations for 5.29% of deaths. Univariate logistic regression was used to identify predictors of home or hospice deaths, revealing a trend of increasing deaths in these settings over time. CONCLUSIONS: Between 1999 and 2020, there was a notable increase in the number of individuals with DS dying at home or in hospice care, especially among those aged 55-64. Female individuals and those identified as white experienced higher mortality rates than other demographic groups. This shift highlights the need to understand the disparity in places of death within this population, ensuring equitable access to quality end-of-life care for all individuals with DS.

14.
World J Clin Cases ; 12(21): 4626-4631, 2024 Jul 26.
Artigo em Inglês | MEDLINE | ID: mdl-39070815

RESUMO

BACKGROUND: Hospice care plays an important role in improving the quality of life of advanced cancer patients, but controversy remains over whether age affects the attitudes of family members toward hospice care. AIM: To investigate the attitudes of family members of advanced cancer patients of different ages toward hospice care. METHODS: The study participants were 175 family members of patients with advanced cancer from January 2020 and October 2022. The participants were divided into youth (< 40 years, n = 65), middle-aged (40-60 years, n = 59), and elderly (> 60 years, n = 51) groups. Researchers investigated and compared the degree of awareness regarding hospice care, attitudes, and whether the family members of patients would choose hospice care. RESULTS: Among the family members of 175 patients, approximately 28% (49/175) were aware of hospice care. Awareness of hospice care, the proportion of hospice care acceptance and adaptation attitudes, and the proportion of those who chose hospice care in the youth group were higher in the middle-aged and elderly groups (P < 0.05). No statistically significant difference was found in these three indicators between the middle-aged and elderly groups (P > 0.05). Hospice care was chosen mainly to relieve pain and reduce unnecessary treatment, whereas the reasons for not choosing hospice care were mainly distrust and ethical concerns. CONCLUSION: The family members of patients with advanced cancer had relatively low awareness of hospice care, while youth had a higher awareness of hospice care, acceptance, and adaptation attitudes, and were more willing to choose hospice care.

15.
J Clin Med ; 13(11)2024 May 28.
Artigo em Inglês | MEDLINE | ID: mdl-38892872

RESUMO

Background/Objectives: The subject of this article is the reflection on hope-one of the most important predictors and motivators of human actions. Hope is our response to a threat, and it is also the emotion that allows us to overcome hopelessness and to reduce suffering. Hoping is a human capacity with varying cognitive, emotional, and functional dimensions. Psychological, pedagogical (particularly in the framework of special-needs pedagogy and thanatological pedagogy), and theological reflection on hope can be helpful for dying people. The objective of this study was to characterize hope in the semantic space of individuals in the terminal stage of cancer and to verify whether age is a variable that determines this hope. Methods: To complete the study, the Osgood semantic differential method was applied, as modified by Polish psychologist Dr. Boguslaw Block (the DSN-3 test). The research technique consisted of a therapeutic conversation. Results: Research results show that, in general, those in the terminal stage have positive associations with hope. In all three aspects of the used test, namely the cognitive, emotional, and functional aspects, the highest scores assigned to the perception of hope were obtained from men up to 35 years of age. Depending on the ages of patients, one could observe certain semantic shifts, but they did not prove to be statistically significant. Conclusions: Polish males surveyed at the end of life due to cancer generally perceived hope as a supportive force. Therefore, hope can provide emotional support to patients in the terminal stage of cancer and improve their quality of life.

16.
Palliat Care Soc Pract ; 18: 26323524241254838, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38855565

RESUMO

Death may be the only certainty in life, but for palliative care patients and their carers, it is anything but. How long is there left? Will a hospice bed be available? What new loss (big or small), will tomorrow bring? Research suggests that the poor management of uncertainty in palliative care can significantly impact patient outcomes as well as the experience of bereaved families. Social workers cannot mitigate this uncertainty, but they can support individuals to recognise and engage with it. Often, this can create tensions with their personal instinct to remove distress, as well as their professional drive to 'fix things'. By overcoming these challenges and embracing their ability to find ways forward 'in the midst of the messy stuff', they model a constructive mode of behaviour that patients and other multidisciplinary professionals can then mirror.

17.
Am J Hosp Palliat Care ; : 10499091241262436, 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38875358

RESUMO

Hospices in California have undergone significant and complicated ownership changes in recent years. Little is known about the impact of these ownership changes on hospices. The purpose of our longitudinal, retrospective descriptive study was to describe the ownership changes impacting hospices 2018 to 2021 in California. Using descriptive statistics, we measured characteristics of hospices with and without ownership changes employing public data from the California Home Health Agencies and Hospice Annual Utilization Report. Ownership change characteristics were measured via publicly available hospice provider and facility data. Spatial characteristics were additionally measured via latitude and longitude publicly available data. Our findings showed that ownership changes were significant and complicated. An influx of for-profit organizations into the California market was primarily responsible for these changes. Additionally, lack of corporate financial public disclosure and voluntary hospice accreditation, certification, and reporting result in a lack of free, publicly available, definitive comprehensive data on for-profit hospice ownership. This hinders information gathering on and provider/familial choice-making regarding hospices. Our study provides critical insight into the impact of ownership changes and lack of definitive, free, publicly available information on adult hospices in California caring for children and has important clinical, research, and policy implications.

18.
SAGE Open Med ; 12: 20503121241259285, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38867717

RESUMO

Objective: Do-Not-Attempt-Resuscitation orders originated in the early 1960s with the establishment of advanced cardiopulmonary resuscitation. These orders aim to limit therapeutic efforts in cases where it may be futile. The decision not to resuscitate a patient is a process that involves a series of ethical, legal, and clinical considerations. Still, it also requires a process in which priority is given to the patients and their autonomy. The objective of this study was to describe the knowledge and attitudes of physicians working in Chile toward Do-Not-Attempt-Resuscitation orders. Methods: A cross-sectional study was conducted, in which a digital questionnaire was sent to physicians from different regions of Chile. Quantitative variables were analyzed using measures of central tendency and dispersion (e.g., median and interquartile range), while qualitative variables were evaluated using frequencies and percentages. Results: Four hundred and thirty-one physicians completed the survey. 85.4% were familiar with the ethical and legal guidelines for cardiopulmonary resuscitation and the rights and duties of the patient. 39.2% believed that patients should have the final decision Do-Not-Attempt-Resuscitation orders, especially if they themselves requested not to be resuscitated. 87.7% mentioned that the Do-Not-Attempt-Resuscitation orders should be reassessed if the patient's prognosis improves. In addition, it was found that the decision not to resuscitate was not always discussed with the patient or their family. Conclusions: The study revealed an ethical conflict regarding Do-Not-Attempt-Resuscitation orders and their management by Chilean physicians. Therefore, it is necessary to create recommendations and provide training to guide professionals in this process, which should also involve patients and their families.

19.
Artigo em Inglês | MEDLINE | ID: mdl-38936971

RESUMO

BACKGROUND: Regional hospice and palliative care networks (RHPCNs) are increasingly being established to improve integrative care for patients with life-limiting illnesses. This scoping review aimed at identifying and synthesising international literature on RHPCNs, focusing on structures, outcomes, benefits, success factors and good practices. METHOD: Following Arksey and O'Malley's (2005) framework, a search of four electronic databases (CINAHL, Google Scholar, PubMed, Web of Science Core Collection) was conducted on 7 July 2023. Additionally, a manual search of reference lists of the identified articles was performed. Original research, qualification theses and descriptive reports on RHPCNs at a structural level were included. FINDINGS: Two researchers analysed 777 article abstracts, screened 104 full texts and selected 24 articles. The included studies predominantly used qualitative designs. RHPCNs self-identify as local stakeholders, employ coordination offices and steering committees, and actively recruit network partners. Outcomes included improved professional practices, enhanced quality of care, increased patient utilisation of regional care offerings and improved patient transitions between care providers. Success factors included clear coordination, transparent communication, strategic planning and resource-securing strategies. CONCLUSIONS: The analysis identified key RHPCN success factors such as effective communication and adaptive leadership. Despite the need for further research, the findings emphasise RHPCNs' potential to improve palliative care and encourage policymaker support. OTHER: This scoping review is part of the research project HOPAN, which aims at assessing and analysing RHPCNs in Germany. The project is funded by the German Innovation Fund of the Federal Joint Committee (G-BA) (Grant N° 01VSF22042; funding period: 01/2023-12/2024).

20.
BMC Palliat Care ; 23(1): 156, 2024 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-38902635

RESUMO

BACKGROUND: Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. METHODS: This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care. DISCUSSION: Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma. TRIAL REGISTRATION: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.


Assuntos
Cuidadores , Comunicação , Cuidados Paliativos , Alta do Paciente , Pesquisa Qualitativa , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Alta do Paciente/normas , Cuidadores/psicologia , Pessoal de Saúde/psicologia , Atenção Primária à Saúde/normas , Masculino , Feminino , Adulto , Entrevistas como Assunto/métodos , Pacientes/psicologia , Continuidade da Assistência ao Paciente/normas
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