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Nurse-Delivered Telehealth in Home-Based Palliative Care: Integrative Systematic Review.
Background: Telehealth technologies can enhance patients' and their families' access to high-quality resources in home-based palliative care. Nurses are deeply involved in delivering telehealth in home-based palliative care. However, no previous integrative systematic reviews have synthesized evidence on nurses' roles, facilitators, and barriers to implementing nurse-delivered telehealth in home-based palliative care. Objective: This integrative systematic review aimed to provide a comprehensive understanding of the roles of nurses and the multilevel facilitators and barriers to implementing nurse-delivered telehealth in home-based palliative care, which could inform future policy development, research, and clinical practice. Methods: This integrative systematic review was conducted using Joanna Briggs Institute methodological guidance. We followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines. We systematically searched articles published from January 1, 2014, to May 2024 in PubMed, Embase, Web of Science, CINAHL, and Cochrane Library. We included English-language; peer-reviewed; original; and qualitative, quantitative, and mixed methods studies that centered on nurse-delivered telehealth in home-based palliative care. We used the Mixed Methods Appraisal Tool to assess the quality of the included articles. Furthermore, 3 authors independently assessed eligibility, extracted data, and assessed the quality of articles. The entities to extract were identified by research questions of interest regardless of the type of study. We applied a convergent synthesis approach to integrate quantitative and qualitative data. Guided by the updated Consolidated Framework for Implementation Research (CFIR) 2.0, we synthesized the facilitators and barriers to implementing nurse-delivered telehealth in home-based palliative care. Results: This integrative systematic review identified 4819 unique articles, including 34 papers encompassing 29 unique primary research studies. Innovations were mainly delivered by nurses (n=8) and nurse-involved multiprofessional teams (n=18). The roles of nurses in telehealth home-based palliative care involve palliative care nurses, community nurses, nurse coordinators, nurse coaches or nurse navigators, and nurse case managers. Guided by CFIR 2.0, facilitators and barriers to implementing nurse-delivered, telehealth, home-based palliative care were identified to 6 implementation levels and 20 constructs. The key facilitators included the COVID-19 pandemic, cost avoidance to the health care system, engagement of patients and their family caregivers, and so on. The barriers included a lack of reimbursement and payment mechanisms, technical problems, insufficiently trained health care providers, and so on. Conclusions: This integrative systematic review synthesizes evidence on nurses' evolving roles in telehealth home-based palliative care and identifies multilevel facilitators and barriers to nurse-delivered, home-based palliative care implementation. With the empowerment of telehealth technologies, nurses could establish a stronger professional identity and develop leadership in home-based palliative care. Nurses should leverage influence to promote nursing practice, clinical management, and policy support in the implementation of telehealth home-based palliative care. Trial registration: PROSPERO CRD42024541038; https://www.crd.york.ac.uk/PROSPERO/view/CRD42024541038.
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Patients' Experiences in the Transition From Hospital to Home Palliative Care: A Systematic Review and Thematic Synthesis of Qualitative Studies.
Introduction: The concept of transition refers to the shift from hospital-based care to home-based palliative care, encompassing the physical, emotional, and logistical adjustments patients and families face. This study aimed to synthesize the experiences of people in palliative situations at home. Methods: A systematic review using thematic synthesis was guided using Preferred Reporting Items for Systematic Reviews and Meta-Analyzes (PRISMA) to organize the extracted information. Preparation of the qualitative synthesis followed ENTREQ-Enhancing transparency in reporting the synthesis of qualitative research recommendations. The literature search was carried out in MEDLINE, CINAHL, Psychology and Behavioral Sciences Collection, ProQuest, and Worldcat, until October 31, 2023, for articles addressing the experiences of people over 18 years of age in a palliative situation at home. Data analysis employed thematic synthesis, involving inductive coding, development of themes, and interpretative synthesis to provide a comprehensive understanding of patient experiences. Results: Of the 441 articles identified, 17 studies were included. Data analysis was guided by Meleis 's Theory of Transitions, and six distinct categories were included in the conditions of the transition (facilitators or inhibitors): "Personal Facilitators," "Community Facilitators," "Social Facilitators," "Personal Inhibitors," "Community Inhibitors," and "Social Inhibitors." Conclusions: Findings indicate that the unique nature of the palliative condition and self-perception requires nursing care adapted to the person's experiences. The data collected and the analysis carried out in this thematic synthesis of the literature collectively contributed to identifying the facilitating and inhibiting factors regarding the complex transition process, considering the Theory of Transitions. The findings highlight the importance of personalized care approaches that address patients' emotional, social, and logistical needs during the transition to home-based palliative care. They underscore the need for enhanced communication, caregiver support, and accessible healthcare resources to improve patient and family experiences, guiding future interventions and policy development in palliative care.
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Descriptions of advanced multimorbidity: A scoping review with content analysis.
Introduction: Multimorbidity is associated with adverse clinical outcomes, including increased symptom burden and healthcare utilisation, particularly towards the end of life. Despite this, there is no accepted method to identify the point at which individuals with deteriorating health due to long-term conditions are nearing the end of life or might benefit from a palliative care approach - conceptualised as 'Advanced Multimorbidity'. This scoping review explored how Advanced Multimorbidity is described and operationalised within the literature. Methods: Multiple electronic databases and Grey Literature sources were searched following scoping review frameworks. Two reviewers independently performed screening and data extraction. Content analysis was used to examine the different descriptions of Advanced Multimorbidity. Stakeholder consultations were undertaken with clinicians, academics and public participants. Patient and public involvement was separately integrated throughout this review from conceptualisation, design and reporting. Results: Forty-four different descriptions of Advanced Multimorbidity were identified from 38 publications. These varied in terms of the clinical conditions and descriptors used. Eighteen descriptions relied on a single indicator to identify Advanced Multimorbidity; 24 used a multidimensional approach. Stakeholder consultations highlighted the need for descriptions that are user-friendly and actionable. Conclusion: The lack of a standardised definition of Advanced Multimorbidity risks variance in clinical and research practice, potentially affecting patient care. A consensus on defining Advanced Multimorbidity would enable better identification of patients who could benefit from a palliative care approach, ensuring more consistent and person-centred care, as well as supporting research and policy development.
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Enhancing rural community engagement through palliative care networks: A scoping review
Abstract Palliative care is a crucial discipline that alleviates suffering and enhances the quality of life for patients with life-limiting illnesses and their families. However, there is gap globally between the need for and availability of these services. Integrated health service networks offer a promising solution to address this gap in rural areas, by coordinating care across different levels and sectors. This scoping review aimed at identifying the key characteristics of palliative care networks in rural communities. A broad search without time limits was conducted in four databases. Analysis and synthesis were conducted using Latent Dirichlet Allocation topic modeling. Sixteen studies were included, revealing four key themes regarding the development of palliative care networks in rural areas: community engagement is essential to secure the reach of rural networks, tailored approaches acknowledging diversity enrich these networks, team-centric efforts involving stakeholder coordination ensure successful implementation, and a multifaceted approach-empowering non-traditional stakeholders and incorporating technology resources into primary health services-dynamizes palliative care delivery in rural areas. These findings underscore the potential of collaborative and innovative approaches to enhance the accessibility and effectiveness of palliative care in underserved rural communities. Further cost-effectiveness studies are warranted to better understand the impact these strategies can have on health systems.
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The Use of Person-Centered Outcome Measures to Support Integrated Palliative Care for Older People: A Systematic Review.
Objectives: The aim was to synthesize evidence on the use of person-centered outcome measures to facilitate integrated palliative care for older people and build a logic model depicting the mechanisms through which person-centered outcome measures support integrated care. Design: Mixed methods systematic review using a data-based convergent synthesis design. Setting and participants: Older people aged ≥60 years who are approaching the end of their lives in multiple settings. Methods: The study was underpinned by a conceptual framework of integrated palliative care, which informed the search strategy, data extraction, analysis, and synthesis. A hybrid search strategy was implemented, with database searches (PsycINFO, MEDLINE, CINAHL, and ASSIA) complemented by snowball searches. Qualitative and quantitative data were analyzed by narrative synthesis to summarize and explain the findings. The findings informed a logic model depicting the mechanisms of using person-centered outcome measures to support integrated palliative care. Results: Twenty-six studies were included. Three mixed methods studies, 2 qualitative studies, and 21 quantitative studies were included. There was evidence that person-centered outcome measures could support integrated palliative care through informing palliative care policy development (n = 4), facilitating joint working across settings (n = 5), enabling close collaboration of multidisciplinary teams (n = 14), promoting joint education (n = 1), facilitating timing and specialist referral (n = 6), and enhancing patient-centered care (n = 3). Conclusions and implications: This review makes an important, novel, and theoretically informed contribution to the delivery of scalable and sustainable integrated palliative care into the care of older people using person-centered outcome measures. The constructed logic model provides a conceptual framework and practical approach to how person-centered outcome measures support multilevel integration. A future area of research is the development of person-centered outcome measure interventions informed by the logic model to meet clinical needs.
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Family members' participation in palliative inpatient care: An integrative review
AIM: To analyse how family members participate in hospital inpatient palliative care, and how their participation could be supported. METHODS: This review followed a methodology outlined in the literature for integrative reviews. A literature search supplemented by a manual search was conducted on four electronic databases during 2020 to 2021: PubMed, CINAHL, PsycINFO, and Cochrane Library. A critical appraisal of the included studies was performed, and data were analysed using inductive content analysis. RESULTS: The literature search resulted in 4990 articles, of which 14 articles were included in this review. Four main categories were identified concerning the participation of family members in hospital inpatient palliative care: participation in the physical care, provision of emotional support, promoting good patient care, and support provided by healthcare professionals for family members' participation. Family members' participation can be supported in different ways, including active communication and adequate information. CONCLUSION: Family members' participation in hospital inpatient palliative care has been an important part of palliative care in hospital settings. Family members should be offered the opportunity to participate in patient care, and their presence in the hospital should be accommodated. Research on the topic is still scarce, and future research is needed from different perspectives, including intervention research.
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Palliative care in Malawi: A scoping review
Background: Universal access to palliative care remains a distant goal in many low resource settings, despite the growing evidence of its benefits. The unmet need for palliative care is evident in Africa, but great strides in palliative care development have occurred in several African countries. Located in sub-Saharan Africa, Malawi has been regarded as an exemplar of progress in this area that is achievable in a low resource region. This scoping review examined the literature on the development and state of palliative care in Malawi according to the pillars of health care policy, medicine availability, education, implementation, research activity, and vitality of professionals and advocates. Methods: A scoping review was conducted of the MEDLINE, Embase, Global Health, CINAHL, Web of Science and PsycINFO databases, as well as grey literature sources. Articles were included if they explored any aspect of palliative care in Malawi. Results: 114 articles were identified that met the inclusion criteria. This literature shows that Malawi has implemented diverse strategies across all pillars to develop palliative care. These strategies include creating a national stand-alone palliative care policy; integrating palliative care into the curricula of healthcare professionals and developing training for diverse service providers; establishing systems for the procurement and distribution of opioids; implementing diverse models of palliative care service delivery; and launching a national palliative care association. Malawi has also generated local evidence to inform palliative care, but several research gaps were identified. Conclusions: Malawi has made considerable progress in palliative care development, although initiatives are needed to improve medicine availability, access in rural areas, and socioeconomic support for patients and their families living with advanced disease. Culturally sensitive research is needed regarding the quality of palliative care and the impact of therapeutic interventions.
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An evidence-base for the implementation of hospital-based palliative care programs in routine cancer practice: A systematic review
BACKGROUND: Despite global support, there remain gaps in the integration of early palliative care into cancer care. The methods of implementation whereby evidence of benefits of palliative care is translated into practice deserve attention. AIM: To identify implementation frameworks utilised in integrated palliative care in hospital-based oncology services and to describe the associated enablers and barriers to service integration. DESIGN: Systematic review with a narrative synthesis including qualitative, mixed methods, pre-post and quasi experimental designs following the guidance by the Centre for Reviews and Dissemination (PROSPERO registration CRD42021252092). DATA SOURCES: Six databases searched in 2021: EMBASE, EMCARE, APA PsycINFO, CINAHL, Cochrane Library and Ovid MEDLINE searched in 2023. Included were qualitative or quantitative studies, in English language, involving adults >18 years, and implementing hospital-based palliative care into cancer care. Critical appraisal tools were used to assess the quality and rigour. RESULTS: Seven of the 16 studies explicitly cited the use of frameworks including those based on RE-AIM, Medical Research Council evaluation of complex interventions and WHO constructs of health service evaluation. Enablers included an existing supportive culture, clear introduction to the programme across services, adequate funding, human resources and identification of advocates. Barriers included a lack of communication with the patients, caregivers, physicians and palliative care team about programme goals, stigma around the term 'palliative', a lack of robust training, or awareness of guidelines and undefined staff roles. CONCLUSIONS: Implementation science frameworks provide a method to underpin programme development and evaluation as palliative care is integrated within the oncology setting.
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Telehealth palliative care interventions for patients with advanced cancer: A scoping review
PURPOSE: Telehealth allows patients to maintain contact with healthcare providers without necessitating travel, and is becoming increasingly utilized. The purpose of this study is to describe the components of telehealth palliative care interventions for patients with advanced cancer before the COVID-19 pandemic; identify any intervention components associated with improvements in outcomes; and evaluate reporting of interventions. METHODS: This scoping review was registered on the Open Science Framework. We searched 5 medical databases from inception to June 19, 2020. Inclusion criteria were: age ≥ 18, advanced cancer, asynchronous or synchronous telehealth intervention, and specialized palliative care interventions in any setting. We assessed the quality of intervention reporting using the Template for Intervention Description and Replication (TIDieR) checklist. RESULTS: Twenty-three studies met the inclusion criteria: 15 (65%) quantitative (7 randomized controlled trials, 5 feasibility trials, 3 retrospective chart reviews); 4 (17%) mixed methods, and 4 (17%) qualitative. Most quantitative and mixed methods studies were conducted in North America (12/19, 63%), reported on hybrid (in-person and telehealth) interventions (9/19, 47%), and were delivered by nurses (12/19, 63%) in the home setting (14/19, 74%). In most studies that reported improvements in patient- or caregiver-reported outcomes, the content was psychoeducational and resulted in improvements for psychological symptoms. No study provided complete reporting on all 12 TIDieR checklist items. CONCLUSION: Telehealth studies are needed that reflect palliative care's mission to provide multidisciplinary team-based care that improves quality of life in diverse settings, and that provide detailed reporting of interventions.
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Advance care planning for frail elderly: Are we missing a golden opportunity? A mixed-method systematic review and meta-analysis
OBJECTIVE: The aim is to integrate quantitative and qualitative evidence to understand the effectiveness and experience of advance care planning (ACP) for frail elderly. DESIGN: A mixed-methods systematic review and meta-analysis was conducted. Quality evaluation was conducted using critical appraisal tools from the Joanna Briggs Institute. Data were synthesised and pooled for meta-analysis or meta-aggregation as needed. DATA SOURCES: An electronic search of MEDLINE, CINAHL, Embase, PubMed, PsycINFO, and Cochrane Library databases from January 2003 to April 2022. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: We included experimental and mixed-methods studies. The quantitative component attempts to incorporate a broader study design. The qualitative component aids in comprehending the participant's experience with ACP and its efficacy. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers undertook screening, data extraction and quality assessment. The quantitative and qualitative data were synthesised and integrated using a convergent segregated approach. RESULTS: There were 12 158 articles found, and 17 matched the inclusion criteria. The quality of the quantitative component of most included studies (6/10) was rated as low, and the qualitative component of half included studies (4/8) was rated as moderate. The meta-analysis showed that the intervention of ACP for frail elderly effectively increases readiness, knowledge and process of ACP behaviours. The meta-aggregation showed that the participants hold a positive attitude towards ACP and think it facilitates expressing their preferences for the medical decision. CONCLUSION: ACP is an effective and feasible strategy to facilitate frail elderly to express their healthcare wishes timely and improve their outcomes. This study could provide proof for a better understanding of the subject and help direct future clinical practice. More well-designed randomised controlled trials evaluating the most effective ACP interventions and tools are needed for the frail elderly population.
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Role of clinical pharmacist in the palliative care of adults and elderly patients with cancer: A scoping review
OBJECTIVE: We conducted this scoping review to map and summarize scientific evidence on the role of clinical pharmacists in the palliative care of adults and elderly patients with cancer. DATA SOURCES: A literature search was performed in MEDLINE, PubMed Central, Embase, Web of Science, Scopus, and BVS/BIREME for studies published until November 22nd, 2020. Studies that reported work experiences adopted by clinical pharmacists in the palliative care of adults and elderly patients with cancer were included. Two independent authors performed study selection and data extraction. Any disagreements were resolved by discussion with the third and fourth authors. The pharmacist interventions identified in the included studies were described based on key domains in the DEPICT v.2. DATA SUMMARY: A total of 586 records were identified, of which 14 studies fully met the eligibility criteria. Most of them were conducted in the United States of America and Canada and described the workplace of the pharmacist in clinic/ambulatory. Clinical pharmacists performed several activities and provided services, highlighting medication review, patient and caregivers education, medication histories and-or medication reconciliation. The pharmacist interventions were mostly conducted for patients/caregivers, by one-on-one contact, and by face-to-face. Pharmacists were responsible mainly for change or suggestion for change in therapy and patient counselling. Pharmacist interventions were well accepted by the clinical team. Overall, studies showed that pharmacists, within an interdisciplinary team, had significant impacts on measured outcomes. CONCLUSIONS: In recent years, there have been advances in the role of the pharmacist in palliative care of patients with cancer and there are great opportunities in this field. They play an important role in managing cancer pain and other symptoms, as well as resolving drug related problems. We encourage more research to be carried out to strengthen this field and to benefit patients with advanced cancer with higher quality of life.
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Palliative care in older people with multimorbidities: A scoping review on the palliative care needs of patients, carers, and health professionals
Although numerous studies have been conducted previously on the needs of cancer patients at the end of their life, there is a lack of studies focused on older patients with non-oncological complex chronic multipathologies. Examining these needs would help to gain a greater understanding of the profile of this specific population within the palliative care (PC) pathway and how the health and care systems can address them. The aim of this review was to identify the needs influencing PC among older patients with multimorbidities, their relatives or informal caregivers, and the health professionals who provide care for these patients. A scoping literature review guided by the Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist was carried out with literature searched in the Medline, Embase, CINAHL, WoS, Cochrane Library, PsycINFO, and Scopus databases from 2009 to 2022. Eighty-one studies were included, demonstrating a great variety of unaddressed needs for PC among chronic older patients and the complexity in detecting those needs and how to refer them to PC pathways. This review also suggested a scarcity of tools and limited pathways for professionals to satisfy their needs for these patients and their families, who often felt ignored by the system. Substantial changes will be needed in health and care systems at the institutional level, providing more specialized PC environments and systematizing PC processes.
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Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis
BACKGROUND: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. AIMS: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. DESIGN: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. DATA SOURCES: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. FINDINGS: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. CONCLUSIONS: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.
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Palliative care utilization among Non-Western migrants in Europe: A systematic review
The paper aims to identify and describe the European evidence on opportunities and barriers to access and utilization of palliative care among non- western migrants. A systematic review in accordance with PRISMA guidelines was conducted in June 2020, searching Medline, CINAHL, PsychINFO and EMBASE databases. PROSPERO# CRD42020193651. Studies included empirical research published between 2011 and 2020. Search words were, for example, ethnic groups and palliative care. Thematic analysis was used to analyze data. Twenty nine qualitative and six quantitative studies were included. Four main themes were identified: communication and language; knowledge and awareness; patient preferences, cultural and religious issues; and lack of resources at different levels of palliative care service provision. Migrants' access to palliative care is impeded at system, community and individual levels, yet, recommendations are mostly at the individual level. Closer attention is required to these different levels when designing future palliative interventions for migrants.
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End of life care pathways in the Emergency Department and their effects on patient and health service outcomes: An integrative review.
Introduction: End of life (EOL) care in the Emergency Department (ED) requires focused, person-centred care to meet the needs of this vulnerable cohort of patients. Methods: An integrative review of the literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guideline was conducted. Studies were included if they were primary research relating to patients in the ED at the EOL, and/or evaluated EOL care pathways in the ED. Databases OVID Emcare, OVID Medline, and Scopus were searched from 1966-September 2021; followed by screening and appraisal. Articles were compared and data grouped into categories. Results: Eleven research articles were included generating three categories for EOL care in ED. 1) tools/criteria to identify patients who may require EOL care in ED; 2) processes for providing EOL care, and 3) implementation methods/frameworks to support the uptake of EOL care processes. Conclusion: There were some commonalities in the criteria used to identify patients who may be at their EOL and the interventions implemented thereafter. There was no standardised process for screening for or treating EOL care needs in the ED. Further research is required to determine the impact that EOL care pathways have on patient and health service outcomes to inform strategies for future policy development.
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Elements of Integrated Palliative Care in Chronic Heart Failure Across the Care Continuum: A Scoping Review.
Background: Individuals with chronic heart failure experience high symptom burden, reduced quality of life and high health care utilisation. Although there is growing evidence that a palliative approach, provided concurrently with usual treatment improves outcomes, the method of integrating palliative care for individuals living with chronic heart failure across the care continuum remains elusive. Aim: To examine the key elements of integrated palliative care recommended for individuals living with chronic heart failure across the care continuum. Design: Scoping review. Data sources: Databases searched were CINAHL, Ovid MEDLINE, Scopus and OpenGrey. Studies written in English and containing key strategic elements specific to chronic heart failure were included. Search terms relating to palliative care and chronic heart failure and the Joanna Briggs Institute methodology for scoping reviews was used. Results: Seventy-nine (79) articles were selected that described key elements to integrate palliative care for individuals with chronic heart failure. This review identifies four levels of key strategic elements: 1) clinical; 2) professional; 3) organisational and 4) system-level integration. Implementing strategies across these elements facilitates integrated palliative care for individuals with chronic heart failure. Conclusions: Inter-sectorial collaborations across systems and the inter of health and social services are essential to delivering integrated, person-centred palliative care. Further research focussing on patient and family needs at a system-level is needed. Research with strong theoretical underpinnings utilising implementation science methods are required to achieve and sustain complex behaviour change to translate key elements.
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Components for providing person-centred palliative healthcare: An umbrella review
BACKGROUND: Person-centred palliative healthcare is an important approach to maintaining and improving patients' quality of life living with a chronic non-communicable disease and their partners. Such an approach can reduce unnecessary hospitalisation, holistically address the patient and their partners' needs, and help develop an advance care plan. OBJECTIVES: Assess, analyse, and synthesise the currently existing international guidelines for providing person-centred palliative care and identify the key components for providing a high-quality approach. METHODS: An umbrella review methodology of systematic reviews with the method of examination, analysis and synthesis of literature and the compilation method. Relevant systematic reviews of guidelines for providing person-centred palliative care in English, German and/or Slovenian language in PubMed, CINAHL, Web of Science and Cochrane Library databases, until November 2020. RESULTS: Out of 3,910 records, we included seven reviews for thematic synthesis. We identified four key elements of flourishing in person-centred palliative healthcare: (i) Healthcare staff prerequisites and traits; (ii) Palliative healthcare environment; (iii) Palliative healthcare processes; and (iv) Palliative healthcare outcomes. CONCLUSIONS: We concluded that person-centred palliative healthcare plays an important role in the comprehensive treatment of patients living with a non-communicable disease accompanied by disturbing symptoms. Therefore, it is necessary to raise awareness amongst healthcare professionals and especially general practitioners about the possibilities of including patients with a non-communicable disease in early person-centred palliative healthcare.
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The perspective of professional caregivers working in generalist palliative care on 'good dying': An integrative review
In today's industrial societies, many people die receiving professional care. Although specialist palliative and hospice care have often been identified as ideal care approaches to promote good dying, more people die receiving generalist palliative care. This integrative review examines how professional caregivers providing generalist palliative care in hospitals, nursing or private homes define good dying. Furthermore, through comparative analysis of existing empirical studies, it explores conceptual aspects in researching good dying that better reflect the social complexity of this phenomenon. Three databases (Scopus, MEDLINE, and CINAHL) were searched for peer-reviewed studies published between January 2000 and April 2020. Studies were selected if they presented original empirical findings from qualitative or quantitative studies on the perspective of professional caregivers in generalist palliative care (nurses, physicians, surgeons, clergy, and other staff) on good dying or related concepts (e.g., good death, dignity in dying, or quality of life at the end of life). 42 studies were included in the review. They identified good dying as expected, accepted and prepared dying, as free from pain and suffering, as socially embedded, as being at peace with one's life and situation, as supported with individualised and holistic care, as based upon professional cooperation and communication, and as in a peaceful and private environment. The paper concludes that the perspective of professional caregivers in generalist palliative care shares many elements of good dying with societal and specialist palliative care discourses around good dying. Through comparing the different studies, the review found that studies that explicated who benefitted from ideals and practices of good dying, questioned the dichotomous categorisation of good/bad dying, or discussed the compatibility of elements of good dying, provided more nuanced perspectives on this topic. Thus, the review calls for a more systematic analysis of these aspects in research of good dying.
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The grief and bereavement experiences of informal caregivers: A scoping review of the North American literature
BACKGROUND: Informal caregivers are a significant part of the hospice and palliative care landscape as members of the interdisciplinary care team. Despite this, little is known about the impact this responsibility has on informal caregivers' experiences of grief and bereavement. OBJECTIVE: To address this, a scoping review of the literature was conducted to explore the current state of knowledge toward grief and bereavement of informal caregivers of adult/geriatric patients in the hospice and palliative/end-of-life care realm within North America. METHODS: Using Arksey and O'Malley's 5-step framework, key electronic health care and social sciences databases (eg, CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO) alongside gray literature sources were searched and screened against inclusion and exclusion criteria. A thematic content analysis was used to identify key themes. RESULTS: 29 articles met the final inclusion criteria with 3 central themes emerging: (1) mediators of grief, (2) grief experiences, and (3) types of grief. DISCUSSION: Informal caregivers encounter unique grief and bereavement experiences: The range of psychosocial outcomes, both negative and positive, can be affected by various mediators such as caregiver burden, demographics, disease type of the patient being cared for, etc. Bereavement interventions must be designed with the mediators of grief in mind. CONCLUSIONS: Understanding the nuances of informal caregivers' experiences with grief and bereavement will inform and advance practice, policy, and research. Practitioners/clinicians should be further educated on how to properly acknowledge the complexity of grief and bereavement for informal caregivers, specifically paying attention to mediators. Further research needs to consider the role of culture.
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Managing clinical uncertainty in older people towards the end of life: a systematic review of person-centred tools.
Background: Older people with multi-morbidities commonly experience an uncertain illness trajectory. Clinical uncertainty is challenging to manage, with risk of poor outcomes. Person-centred care is essential to align care and treatment with patient priorities and wishes. Use of evidence-based tools may support person-centred management of clinical uncertainty. We aimed to develop a logic model of person-centred evidence-based tools to manage clinical uncertainty in older people. Methods: A systematic mixed-methods review with a results-based convergent synthesis design: a process-based iterative logic model was used, starting with a conceptual framework of clinical uncertainty in older people towards the end of life. This underpinned the methods. Medline, PsycINFO, CINAHL and ASSIA were searched from 2000 to December 2019, using a combination of terms: "uncertainty" AND "palliative care" AND "assessment" OR "care planning". Studies were included if they developed or evaluated a person-centred tool to manage clinical uncertainty in people aged ≥65 years approaching the end of life and quality appraised using QualSyst. Quantitative and qualitative data were narratively synthesised and thematically analysed respectively and integrated into the logic model. Results: Of the 17,095 articles identified, 44 were included, involving 63 tools. There was strong evidence that tools used in clinical care could improve identification of patient priorities and needs (n = 14 studies); that tools support partnership working between patients and practitioners (n = 8) and that tools support integrated care within and across teams and with patients and families (n = 14), improving patient outcomes such as quality of death and dying and satisfaction with care. Communication of clinical uncertainty to patients and families had the least evidence and is challenging to do well. Conclusion: The identified logic model moves current knowledge from conceptualising clinical uncertainty to applying evidence-based tools to optimise person-centred management and improve patient outcomes. Key causal pathways are identification of individual priorities and needs, individual care and treatment and integrated care. Communication of clinical uncertainty to patients is challenging and requires training and skill and the use of tools to support practice.
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