Palliative Care and Social Practice最新文献

Objective: To explore the experiences that significantly impact the professional quality of life of people providing palliative care (PC) in Ecuador.

Design: Observational cross-sectional qualitative research.

Methods: In September 2022, 10 focus groups were carried out in four cities in Ecuador; each group lasted from 1 to 2 h, was audio recorded, and transcribed verbatim. Recruitment was conducted through convenience sampling, and a total of 71 individuals (15 students, 50 professionals, and 6 volunteers) linked to PC participated. Content analysis with a phenomenological and inductive approach was used to analyze the data.

Results: People recognized their experiences in PC as having positive and negative impacts on their professional quality of life. Experiences were mapped as affecting them at individual, relational, and contextual levels. These experiences included personal growth, opportunity to provide care, teamwork, death-related issues, inability to deal with work-related stress, social acceptance of PC, and dealing with inefficient health systems, among others.

Conclusion: Despite the positive emotions that arise with caring for others, individuals working and volunteering in PC experience situations that influence their professional quality of life. Addressing these factors to increase satisfaction and ease the burden of PC work is essential. Undergraduate education, continuous professional training, and PC teams should incorporate actions to address these factors at all levels, such as teaching coping skills, fostering social support, and increasing awareness of PC.

Background: The need for palliative care is rising globally with 76% of those who are in need living in low- and middle-income countries (LMICs). Digital health interventions (DHIs) have been identified as a means of making palliative care more widely accessible. This review summarizes the range and characteristics of DHIs used to deliver palliative care in LMICs and sought to identify factors that influence their implementation and utilization.

Objectives: This review aims to summarize the range and characteristics of DHIs used to deliver palliative care in LMICs and identify factors that influence their implementation and utilization.

Design: Mixed-method systematic review incorporating both quantitative and qualitative data.

Data sources and methods: All studies focusing on DHIs for patients who need palliative care (adults/children) and their caregivers (patient and caregiver centred) in LMICs and published in English were identified through a systematic search of MEDLINE, EMBASE, PsycINFO and CINAHL databases. Data synthesis and analysis were carried out following the convergent integrated approach based on the Joanna Briggs Institute (JBI) methodology for mixed-methods systematic reviews.

Results: Fifteen studies were included (three qualitative, four mixed-methods and eight quantitative studies). Telemedicine/mHealth was the most reported DHI utilized in LMICs in delivering palliative care. Patients and caregivers benefited from using DHIs in many ways including increased access to care with reduced discomfort, travel time and risk of health care-associated infections. Health care providers also reported that using DHI such as telemedicine enables them to provide care in a more effective and efficient way. Four factors were identified as the main barriers to implementation: resource constraints; literacy, training and skills; governance, operational and communication issues and technical issues.

Conclusion: DHIs, such as telemedicine, have the potential to enhance accessibility to palliative care in LMICs, particularly in rural areas. Comprehensive strategies for their use are required to address the identified barriers.

A home is a preferred place of death by most people. Nurses play a key role in supporting end-of-life home care, yet less is known about the factors that determine home as a place of death. This scoping review describes the percentage of actual places of death and determines social factors related to home as the place of death among noncancer patients with end-stage chronic health conditions. Inclusion criteria included (1) noncancer chronic illness conditions, (2) outcomes of place of death, and (3) factors that determine home as a place of death. Sources of evidence included PubMed, CINAHL, and Web of Science databases, which were searched in May 2022, and additional searches from May 2022 to November 2023.The JBI scoping review guide (2020) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Scoping Review extension were used. Twenty-eight studies were included in this analysis. The range of percentages is varied within the same place of death among the sample. Two major constructs that determine a home as a place of death were identified: preceding factors and social capital. The results suggest that the place of death among noncancer patients with end-stage chronic health conditions should be continued to be understood. Two constructs determined home as a place of death and are considered as a fundamental to increasing equal accessibility in the initiation of palliative care services to promote home death and meet end-of-life care goals.

Background: The drive for home care has increasingly impacted the organization and allocation of resources within the Swedish healthcare system.

Objectives: With an interest in uncovering prerequisites for palliative care, this study aimed to investigate longitudinal trends in place of death within the adult Swedish population from 2013 to 2019 and examine potential associations between place of death and individual, geographic, and socioeconomic factors; hospital capacity; and healthcare utilization.

Methods: This population-level comprehensive register study included all deceased individuals ⩾18 years old with a registered place of death (n = 599,137). Data were retrieved from public and patient data registers and the national register for palliative care. Trends and associations between place of death and co-variables were investigated by logistic regression- and interaction analyses.

Results: From 2013 to 2019, the total number of home deaths increased by 1.9%, whereas the number of hospital deaths decreased by 2.6%. In the overall population of individuals living in their own homes, from 2013 to 2019, the likelihood of dying in hospital versus dying at home decreased (odds ratio: 0.98, 95% confidence interval: 0.97-0.99). Within the population with potential palliative needs living in their own home (78.4%), the likelihood of dying in hospitals equally decreased, except in Stockholm and the north region. For individuals residing in a nursing home, however, the likelihood of dying in hospital versus remaining in the nursing home until death only significantly decreased in the southern region.

Conclusion: The results show a trend towards a decrease in hospital deaths but with cross-regional variations. Still, in 2019, only about one-fifth of all individuals died in their own homes. Public health-oriented interventions aimed at strengthening palliative care resources in nursing homes and home care are suggested.

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

Objective: To explore the impact of a 2-day, in-person interprofessional palliative care course for staff working in long-term care (LTC) homes.

Methods: A qualitative descriptive study design was employed. LTC staff who had participated in Pallium Canada's Learning Essential Approaches to Palliative Care LTC Course in Ontario, Canada between 2017 and 2019 were approached. Semi-structured interviews were conducted, using an online videoconferencing platform in mid-2021 in Ontario, Canada. These were done online, recorded, and transcribed. Data were coded inductively.

Results: Ten persons were interviewed: four registered practical nurses, three registered nurses, one nurse practitioner, and two physicians. Some held leadership roles. Participants described ongoing impact on themselves and their ability to provide end-of-life (EOL) care (micro-level), their services and institutions (meso-level), and their healthcare systems (macro-level). At a micro-level, participants described increased knowledge and confidence to support residents and families, and increased work fulfillment. At the meso-level, their teams gained increased collective knowledge and greater interprofessional collaboration to provide palliative care. At the macro level, some participants connected with other LTC homes and external stakeholders to improve palliative care across the sector. Training provided much-needed preparedness to respond to the impact of the COVID-19 pandemic, including undertaking advance care planning and EOL conversations. The pandemic caused staff burnout and shortages, creating challenges to applying course learnings.

Significance of results: The impact of palliative care training had ripple effects several years after completing the training, and equipped staff with key skills to provide care during the COVID-19 pandemic. Palliative care education of staff remains a critical element of an overall strategy to improve the integration of palliative care in LTC.

Background: Globally, the demand for hospice care continues to grow resulting in substantial resource burden. Whilst some countries are able to rely on fixed government contributions, statutory funding for palliative care in the United Kingdom is unequally distributed. These unstable funding streams and increased demand means that hospices need to evidence their value.

Objective: This study explored the experiences of patients and family-caregivers to determine what they valued most from accessing hospice services in Wales.

Methods: In this large multi-site qualitative study, 94 semi-structured interviews and 2 focus groups were conducted with hospice patients (n = 45), family-caregivers (n = 18), hospice staff (n = 31) and volunteers (n = 10). The audio recordings were transcribed verbatim and analysed using Framework analysis.

Results: Seven themes described patient and family-caregiver experiences and what they valued most: relationships with staff and volunteers, greater support networks which reduced social isolation and loneliness, provision of information and advice which improved patient autonomy, symptom management and subsequent reduction in psychological distress, improvements in patient functionality, mobility and overall physical health and respite relief which promoted improved relationships.

Conclusion: This is the largest study to explore what patients and family-caregivers value from hospice care. Findings indicate that hospice care provides a truly needs-led and strengths-based service to those who are nearing and at the end-of-life, which is highly valued by patients and family members.

Background: Improvement in quality care is an important aspect of palliative care for individuals with serious illnesses. Palliative care is a multidisciplinary strategy that addresses the physical, emotional, social, and spiritual needs of patients and their families. As technology advances, digital media - especially YouTube - has come to serve as a virtual educational platform, offering resources for health-related information, including information about palliative care.

Objectives: In this research, the main goal was to evaluate the quality and availability of online resources related to palliative care.

Design: Two theoretical frameworks were used: the Health Communication Model and the Information Quality Framework. These frameworks offer a way to understand how YouTube videos contribute to palliative care information and assess the quality of that information.

Methods: This study utilizes a quantitative analysis approach to assess the quality and accessibility of YouTube videos on palliative care. Specifically, a random sample of 300 YouTube videos addressing palliative care was examined. Descriptive statistics were used to analyze the data, including the frequency and distribution of the different types of content, sources, and quality indicators. Chi-square tests were done to compare the quality of information provided by different sources and types of content.

Results: The results showed a variety of video types, with educational videos being the most common (40%), followed by personal stories (26.7%) and promotional videos (16.7%). We found that healthcare organizations (30%) and individual content creators (46.7%) were the sources for these videos.

Conclusion: There were varying scores in terms of accuracy, completeness, and relevance when it came to quality assessment. While many videos received excellent ratings, some received poor ratings. Additionally, this analysis revealed that the majority of these videos were in English (83.3%), which poses a limitation for non-English speakers who may have difficulty understanding them.

Background: Patients with cancer often have to make complex decisions about treatment, with the options varying in risk profiles and effects on survival and quality of life. Moreover, inefficient care paths make it hard for patients to participate in shared decision-making. Data-driven decision-support tools have the potential to empower patients, support personalized care, improve health outcomes and promote health equity. However, decision-support tools currently seldom consider quality of life or individual preferences, and their use in clinical practice remains limited, partly because they are not well integrated in patients' care paths.

Aim and objectives: The central aim of the 4D PICTURE project is to redesign patients' care paths and develop and integrate evidence-based decision-support tools to improve decision-making processes in cancer care delivery. This article presents an overview of this international, interdisciplinary project.

Design methods and analysis: In co-creation with patients and other stakeholders, we will develop data-driven decision-support tools for patients with breast cancer, prostate cancer and melanoma. We will support treatment decisions by using large, high-quality datasets with state-of-the-art prognostic algorithms. We will further develop a conversation tool, the Metaphor Menu, using text mining combined with citizen science techniques and linguistics, incorporating large datasets of patient experiences, values and preferences. We will further develop a promising methodology, MetroMapping, to redesign care paths. We will evaluate MetroMapping and these integrated decision-support tools, and ensure their sustainability using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework. We will explore the generalizability of MetroMapping and the decision-support tools for other types of cancer and across other EU member states.

Ethics: Through an embedded ethics approach, we will address social and ethical issues.

Discussion: Improved care paths integrating comprehensive decision-support tools have the potential to empower patients, their significant others and healthcare providers in decision-making and improve outcomes. This project will strengthen health care at the system level by improving its resilience and efficiency.