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Patient navigation is a strategy for overcoming barriers to reduce disparities and to improve access and outcomes. The aim of this umbrella review was to identify, critically appraise, synthesize, and present the best available evidence to inform policy and planning regarding patient navigation across the cancer continuum. Systematic reviews examining navigation in cancer care were identified in the Cochrane Central Register of Controlled Trials (CENTRAL), PubMed, Embase, Cumulative Index of Nursing and Allied Health (CINAHL), Epistemonikos, and Prospective Register of Systematic Reviews (PROSPERO) databases and in the gray literature from January 1, 2012, to April 19, 2022. Data were screened, extracted, and appraised independently by two authors. The JBI Critical Appraisal Checklist for Systematic Review and Research Syntheses was used for quality appraisal. Emerging literature up to May 25, 2022, was also explored to capture primary research published beyond the coverage of included systematic reviews. Of the 2062 unique records identified, 61 systematic reviews were included. Fifty-four reviews were quantitative or mixed-methods reviews, reporting on the effectiveness of cancer patient navigation, including 12 reviews reporting costs or cost-effectiveness outcomes. Seven qualitative reviews explored navigation needs, barriers, and experiences. In addition, 53 primary studies published since 2021 were included. Patient navigation is effective in improving participation in cancer screening and reducing the time from screening to diagnosis and from diagnosis to treatment initiation. Emerging evidence suggests that patient navigation improves quality of life and patient satisfaction with care in the survivorship phase and reduces hospital readmission in the active treatment and survivorship care phases. Palliative care data were extremely limited. Economic evaluations from the United States suggest the potential cost-effectiveness of navigation in screening programs.
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Neoplasias , Navegação de Pacientes , Humanos , Qualidade de Vida , Revisões Sistemáticas como Assunto , Cuidados Paliativos , Neoplasias/diagnóstico , Neoplasias/terapia , Continuidade da Assistência ao PacienteRESUMO
AIMS: To map the concepts of the caring life-course theory that are used in life-course approaches from different disciplines; establish whether there is a common recognition of, or language used, to describe care in those life-course approaches; and identify the role and contribution of care to the life-course literature. DESIGN: This discursive paper uses a narrative review process to explore points of convergence and divergence between life-course approaches and the caring life-course theory. METHODS: Categories for analysis were developed deductively and inductively, focusing on the constructs of fundamental care, capacity and capability, care network, care transition, care trajectory and care biography. RESULTS: We identified four disciplinary perspectives: (1) life-course sociology; (2) life-course epidemiology; (3) lifespan developmental psychology; and (4) life-course health development. While six core constructs of the caring life-course theory were described, either explicitly or implicitly, in existing life-course approaches, no single approach fully describes the role and contribution of care across the lifespan. CONCLUSION: Life-course approaches have largely neglected the contribution and role of care in informing the life-course discourse. This review highlights the significance of care beyond traditional healthcare settings and recognizes it as a fundamental human need for well-being and development, which can contribute to existing life-course literature. IMPLICATION FOR THE PROFESSION AND/OR PATIENT CARE: There is a need to understand care as a complex system and embrace a whole-system, life-course approach to enable nurses and other healthcare professionals to provide high-quality, patient-centred care. IMPACT: Incorporating care within a life-course approach provides opportunities to integrate and deliver care centred around the person, their life transitions, trajectories and care networks, including informal carers and healthcare professionals. NO PATIENT OR PUBLIC CONTRIBUTION: Patients or members of the public were not involved in this study as it is a discursive paper based on the relevant literature.
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Cuidadores , Ocupações , Humanos , Cuidados Paliativos , Pessoal de SaúdeRESUMO
AIM(S): To operationalize the Caring Life Course Theory (CLCT) as a framework for improving cardiac rehabilitation (CR) engagement and informing ways to address disparities in rural, low socio-economic areas. METHODS: A secondary analysis of data collected from 15 CR programmes to identify CR patterns through the CLCT lens using a mixed-methods approach. All analytical processes were conducted in NVivo, coding qualitative data through thematic analysis based on CLCT constructs. Relationships among these constructs were quantitatively assessed using Jaccard coefficients and hierarchical clustering via dendrogram analysis to identify related clusters. RESULTS: A strong interconnectedness among constructs: 'care from others', 'capability', 'care network' and 'care provision' (coefficient = 1) highlights their entangled crucial role in CR. However, significant conceptual disparities between 'care biography' and 'fundamental care' (coefficient = 0.4) and between 'self-care' and 'care biography' (coefficient = 0.384615) indicate a need for more aligned and personalized care approaches within CR. CONCLUSION: The CLCT provides a comprehensive theoretical and practical framework to address disparities in CR, facilitating a personalized approach to enhance engagement in rural and underserved regions. IMPLICATIONS: Integrating CLCT into CR programme designs could effectively address participation challenges, demonstrating the theory's utility in developing targeted, accessible care interventions/solutions. IMPACT: Explored the challenge of low CR engagement in rural, low socio-economic settings. Uncovered care provision, transitions and individual care biographies' relevance for CR engagement. Demonstrated the potential of CLCT to inform/transform CR services for underserved populations, impacting practices and outcomes. REPORTING METHOD: EQUATOR-MMR-RHS. PATIENT CONTRIBUTION: A consumer co-researcher contributed to all study phases.
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There is an increasing emphasis on transdisciplinary research to address the complex challenges faced by health systems. However, research has not adequately explored how members of transdisciplinary research teams perceive, understand, and promote transdisciplinary collaboration. As such, there is a need to investigate collaborative behaviors, knowledge, and the impacts of transdisciplinary research. To address this gap, we conducted a longitudinal realist evaluation of transdisciplinary collaboration within a 5-year National Health and Medical Research Council-funded Center of Research Excellence in Transdisciplinary Frailty Research. The current study aimed to explore researchers' perceptions and promotion of transdisciplinary research specifically within the context of frailty research using qualitative methods. Participants described transdisciplinary research as a collaborative and integrative approach that involves individuals from various disciplines working together to tackle complex research problems. However, participants often used terms like interdisciplinary and multidisciplinary interchangeably, indicating that a shared understanding of transdisciplinary research is needed. Barriers to transdisciplinary collaboration included time constraints, geographical distance, and entrenched collaboration patterns. To overcome these challenges, participants suggested implementing strategies such as creating a shared vision and goals, establishing appropriate collaboration systems and structures, and role modeling collaborative behaviors, values, and attitudes. Our findings underscore the need for practical knowledge in developing transdisciplinary collaboration and leadership skills across different career stages. In the absence of formal training, sustained and immersive programs that connect researchers with peers, educators, and role models from various disciplines and provide experiential learning opportunities, may be valuable in fostering successful transdisciplinary collaboration.
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We argue that contemporary conceptualizations of "persons" have failed to achieve the moral goals of "person-centred care" (PCC, a model of dementia care developed by Tom Kitwood) and that they are detrimental to those receiving care, their families, and practitioners of care. We draw a distinction between personhood and selfhood, pointing out that continuity or maintenance of the latter is what is really at stake in dementia care. We then demonstrate how our conceptualization, which is one that privileges the lived experiences of people with dementia, and understands selfhood as formed relationally in connection with carers and the care environment, best captures Kitwood's original idea. This conceptualization is also flexible enough to be applicable to the practice of caring for people at different stages of their dementia. Application of this conceptualization into PCC will best promote the well-being of people with dementia, while also encouraging respect and dignity in the care environment.
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Demência , Humanos , Assistência Centrada no Paciente/métodos , PessoalidadeRESUMO
In this article, we investigate how the concept of Care Biography and related concepts are understood and operationalised and describe how it can be applied to advancing our understanding and practice of holistic and person-centred care. Walker and Avant's eight-step concept analysis method was conducted involving multiple database searches, with potential or actual applications of Care Biography identified based on multiple discussions among all authors. Our findings demonstrate Care Biography to be a novel overarching concept derived from the conjunction of multiple other concepts and applicable across multiple care settings. Concepts related to Care Biography exist but were more narrowly defined and mainly applied in intensive care, aged care, and palliative care settings. They are associated with the themes of Meaningfulness and Existential Coping, Empathy and Understanding, Promoting Positive Relationships, Social and Cultural Contexts, and Self-Care, which we used to inform and refine our concept analysis of Care Biography. In Conclusion, the concept of Care Biography, can provide a deeper understanding of a person and their care needs, facilitate integrated and personalised care, empower people to be in control of their care throughout their life, and help promote ethical standards of care.
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Formação de Conceito , Humanos , Assistência Centrada no Paciente/normas , EmpatiaRESUMO
Background: Infectious disease outbreaks disrupt inpatient clinical care and have an impact on staff and patients' ability to communicate with each other and with the wider community. Digital technology may offer opportunities for communication in the inpatient setting during infectious disease outbreaks. Aim: This scoping review aimed to investigate the use of digital technology in the inpatient setting to promote communication in the early stages of an infectious disease outbreak. Methods: There were three aspects to this scoping review: (1) a database search of Ovid MEDLINE (MEDLINE), Cumulative Index of Nursing and Allied Health Literature (CINAHL), Association for Computing Machinery Digital Library (ACM) and IEEE Xplore (IEEE) exploring peer-reviewed articles, (2) a gray literature search, and (3) a media search. Results: Results focused on the early stages of the COVID-19 pandemic. Thirty-eight peer-reviewed articles were extracted from the database search. There were three main areas of investigation: study characteristics, technology features, and benefits and barriers. Forty-four websites were searched for the gray literature search focusing on policy and guidance. Eighteen media articles were retrieved focusing on patients' use of technology and community involvement. Conclusion: Results demonstrate the diverse use of digital technology in the inpatient setting to facilitate communication during the early stages of the COVID-19 pandemic. However, the articles provide limited data to allow readers to fully understand and reproduce described actions. Furthermore, there was limited guidance to support clinicians to communicate using digital technology to create trusting therapeutic relationships. Areas for future development include standard reporting process for technology hardware, software, and content; and structured reporting and evaluation of the implementation of technologies.
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COVID-19 , Humanos , Tecnologia Digital , Pandemias , Pacientes Internados , Surtos de Doenças , ComunicaçãoRESUMO
The phrase 'person-centred care' (PCC) reminds us that the fundamental philosophical goal of caring for people is to uphold or promote their personhood. However, such an idea has translated into promoting individualist notions of autonomy, empowerment and personal responsibility in the context of consumerism and neoliberalism, which is problematic both conceptually and practically. From a conceptual standpoint, it ignores the fact that humans are social, historical and biographical beings, and instead assumes an essentialist or idealized concept of personhood in which a person is viewed as an individual static object. From a practical standpoint, the application of such a concept of personhood can lead to neglect of a person's fundamental care needs and exacerbate the problems of social inequity, in particular for older people and people with dementia. Therefore, we argue that our understanding of PCC must instead be based on a dynamic concept of personhood that integrates the relevant social, relational, temporal and biographical dimensions. We propose that the correct concept of personhood in PCC is one in which persons are understood as socially embedded, relational and temporally extended subjects rather than merely individual, autonomous, asocial and atemporal objects. We then present a reconceptualization of the fundamental philosophical goal of PCC as promoting selfhood rather than personhood. Such a reconceptualization avoids the problems that beset the concept of personhood and its application in PCC, while also providing a philosophical foundation for the growing body of empirical literature that emphasizes the psychosocial, relational, subjective and biographical dimensions of PCC.
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Demência , Pessoalidade , Idoso , Demência/psicologia , Humanos , Assistência Centrada no Paciente/métodos , AutocuidadoRESUMO
When a person with dementia (PwD) makes a specific request or behaves in a particular way that is inappropriate or dangerous and based on a false understanding of reality, there is a particular technique that caregivers may use to try and manage the situation. The technique is known as 'diversion' and it works by affirming the false beliefs and behaviour of a PwD and creating the false impression that their specific request will be fulfilled. It may take the form of an explicit lie or any other communicative response or provision of care that either explicitly or tacitly affirms their false beliefs. It therefore raises the same kind of ethical issues as when lying (or not telling the truth) is done for so called 'therapeutic' purposes. The main type of argument used to justify this so called 'therapeutic lying' is that it is primarily aimed at benefiting the patient rather than the liar. The same kind of argument can be made for diversion, which is that it is primarily aimed at benefiting the PwD by aiming to ensure their safety and well-being. I argue that insofar as diversion is practiced in this way, it is consistent with the idea of 'person-centred care' (PCC) and can be ethically justified on those grounds. Therefore, however, we must be wary of situations where diversion is not practiced in this way, where it is primarily aimed at benefiting caregivers or care providers, and thus inconsistent with PCC.
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Demência , Cuidadores , Demência/terapia , HumanosRESUMO
Given the high prevalence of chronic conditions and multimorbidity in older adults, there is a need to better conceptualize and measure self-care and self-management to promote a person-centered approach. This scoping review aimed to identify and map instruments measuring self-care and self-management of chronic conditions by older adults. We searched six electronic databases, charted data from the studies and tools and reported the results in accordance with the PRISMA-ScR guidelines. A total of 107 articles (103 studies) containing 40 tools were included in the review. There was substantial variation in the tools in terms of their aims and scope, structure, theoretical foundations, how they were developed, and the settings in which they have been used. The quantity of tools demonstrates the importance of assessing self-care and self-management. Consideration of the purpose, scope, and theoretical foundation should guide decisions about tools suitable for use in research and clinical practice.
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Autocuidado , Autogestão , Idoso , Humanos , Doença Crônica , Vida Independente , Multimorbidade , Autocuidado/métodosRESUMO
OBJECTIVES: Nurses, as the largest healthcare workforce, are well-positioned to apply knowledge translation. The role of nursing leadership in facilitating evidence-based practice has been extensively discussed in the literature, but this is not the case for knowledge translation. The objective of this study was to examine the potential role of nurse leaders in applying knowledge translation across health settings. DATA SOURCES: We reviewed the existing literature for evidence-based practice as best practice in clinical care; examined how a complex systems approach to knowledge translation may extend beyond evidence-based practice, and considered nursing leadership approaches including transformational leadership. CONCLUSION: In this discursive article, we discuss the differences between evidence-based practice and knowledge translation, highlight the promise of transformational leadership in facilitating knowledge translation through a complex systems lens, and argue for the importance of nurse leaders in facilitating and supporting complex knowledge translation across healthcare settings. IMPLICATIONS FOR NURSING PRACTICE: Although future research is needed to test our ideas, we argue that the advanced conceptual understanding generated in this article should inform a roadmap toward a future in which nurse leaders initiate, participate and advocate for complex knowledge translation across healthcare settings.
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Prática Clínica Baseada em Evidências , Liderança , HumanosRESUMO
The discipline of knowledge translation (KT) emerged as a way of systematically understanding and addressing the challenges of applying health and medical research in practice. In light of ongoing and emerging critique of KT from the medical humanities and social sciences disciplines, KT researchers have become increasingly aware of the complexity of the translational process, particularly the significance of culture, tradition and values in how scientific evidence is understood and received, and thus increasingly receptive to pluralistic notions of knowledge. Hence, there is now an emerging view of KT as a highly complex, dynamic, and integrated sociological phenomenon, which neither assumes nor creates knowledge hierarchies and neither prescribes nor privileges scientific evidence. Such a view, however, does not guarantee that scientific evidence will be applied in practice and thus poses a significant dilemma for KT regarding its status as a scientific and practice-oriented discipline, particularly within the current sociopolitical climate. Therefore, in response to the ongoing and emerging critique of KT, we argue that KT must provide scope for relevant scientific evidence to occupy an appropriate position of epistemic primacy in public discourse. Such a view is not intended to uphold the privileged status of science nor affirm the "scientific logos" per se. It is proffered as a counterbalance to powerful social, cultural, political and market forces that are able to challenge scientific evidence and promote disinformation to the detriment of democratic outcomes and the public good.
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The aim of this study was to (a) investigate community women's knowledge and experiences of women's health community services in northern rural and regional New South Wales, Australia; (b) identify any existing gaps in community women's health programs in this region and (c) to contribute to service provision, strategic planning, and industry professional development of community nurse researchers in collaboration with industry. The research took place in Northern New South Wales Local Health District (NNSWLHD) Australia, which is comprised of Tweed/Byron, Richmond and Clarence Health Service Groups, during May to September 2019. Participants comprised 13 women's health service clients over the age of 18 years and less than 74 years, attending health services clinics within NNSWLHD. The research was undertaken as a partnership between three senior healthcare professionals (Clinical Nurse Consultants), one from each Health Service Group, and academic researchers, who provided the key senior healthcare professionals with research training and guidance. Key themes related to primary healthcare experiences and needs of women living in NNSWLHD, and the quality of women's primary healthcare services in that region. Thematic analysis revealed four key themes and several sub-themes. These were (1) Knowledge and Awareness of Services, (2) Barriers to Access, (3) Personal Issues and (4) A Need for Women-Centred Care. The major issues women experienced were deficits in services, lengthy wait times and poor access. Additional funding is necessary to uphold community women's health nurse positions in rural health to improve women's health outcomes in these locations.
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Serviços de Saúde Rural , Saúde da Mulher , Adulto , Austrália , Feminino , Pessoal de Saúde , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa , População RuralRESUMO
OBJECTIVE: The objective of the review is to determine the effectiveness of telehealth versus in-person care on health care utilization, health-related quality of life, and well-being in homebound populations. INTRODUCTION: Globally, an increasing number of people are becoming homebound. These individuals experience high levels of social isolation and deterioration of their well-being. Reports from homebound people and recent publications suggest that this cohort may benefit from accessing telehealth solutions from their homes to treat and prevent serious issues affecting their health and well-being. This review will synthesize the evidence on the effectiveness of telehealth compared to standard care (in-person care) on health care utilization, health-related quality of life, and well-being in homebound populations. INCLUSION CRITERIA: Studies including people living in community settings, whose daily life is physically limited to the boundary of their homes because of their ongoing health, energy, and psychosocial or socio-functional impairments will be considered for inclusion. METHODS: This review will consider relevant, peer-reviewed primary experimental and quasi-experimental studies, with no limit on language or date. Databases to be searched include MEDLINE, Embase, PsycINFO, CINAHL, the Cochrane Central Register of Controlled Trials (CENTRAL), Scopus, LILACS, JBI Evidence Synthesis (hand-searched for further studies), and Web of Science. Two independent reviewers will be involved in study selection and data extraction. Eligible studies will be critically appraised for methodological quality using the relevant JBI critical appraisal checklists, and statistical meta-analysis will be done (where possible). Findings will be presented in narrative form. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42021289578.
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Aceitação pelo Paciente de Cuidados de Saúde , Qualidade de Vida , Telemedicina , Humanos , Estudos de Coortes , Revisões Sistemáticas como AssuntoRESUMO
RATIONALE: The proportion of older adults living with long-term conditions (LTCs) is increasing. Self-care and self-management approaches are seen as valuable in helping older people with LTCs to manage their health and care, yet the theoretical overlaps and divergences are not always clear. OBJECTIVES: The objectives of this review were to: (1) systematically identify and appraise studies of self-care or self-management of LTCs by community-dwelling older adults (aged ≥60 years) either informed by, applying, creating, or testing theory; (2) explore similarities or points of convergence between the identified theories; and (3) use a meta-ethnographic approach to synthesise the theories and group related concepts into core constructs. METHODS: We conducted a systematic theory synthesis, searching six electronic databases. Three reviewers independently screened titles and abstracts followed by full texts and two reviewers appraised study quality. Theoretical data were synthesised within and across individual theories using meta-ethnographic line-of-argument synthesis. RESULTS: A total of 141 articles (138 studies) and 76 theories were included in the review. Seven core constructs were developed: (1) temporal and spatial context; (2) stressors; (3) personal resources; (4) informal social resources; (5) formal social resources; (6) behavioural adaptations; and (7) quality of life outcomes. A line of argument was developed that conceptualised older adults' self-care and self-management as a dynamic process of behavioural adaptation, enabled by personal resources and informal and formal social resources, aimed at alleviating the impacts of stressors and maintaining quality of life. CONCLUSION: This synthesis provides an overview of theories used in research on older adults' LTC self-care and self-management. Our synthesis describes the complex interplay of intrinsic and extrinsic factors influencing self-care and self-management behaviours and provides considerations for future research, intervention design, and implementation. The utility of the constructs in research and practice requires further attention and empirical validation.