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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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Barriers and facilitators to the uptake of electronic collection and use of patient-reported measures in routine care of older adults: a systematic review with qualitative evidence synthesis
Objective The aims of this systematic review were to (1) synthesize the available qualitative evidence on the barriers and facilitators influencing implementation of the electronic collection and use of patient-reported measures (PRMs) in older adults' care from various stakeholder perspectives and (2) map these factors to the digital technology implementation framework Non-adoption, Abandonment, challenges to the Scale-up, Spread, Sustainability (NASSS) and behavior change framework Capability, Opportunity, Motivation, Behaviour (COM-B).Materials and Methods A search of MEDLINE, CINAHL Plus, and Web of Science databases from 1 January 2001 to 27 October 2021 was conducted and included English language qualitative studies exploring stakeholder perspectives on the electronic collection and use of PRMs in older adults' care. Two authors independently screened studies, conducted data extraction, quality appraisal using the Critical Appraisal Skills Programme (CASP), data coding, assessed confidence in review findings using Grading of Recommendations Assessment, Development, and Evaluation Confidence in the Evidence from Reviews of Qualitative Research (GRADE CERQual), and mapped the findings to NASSS and COM-B. An inductive approach was used to synthesize findings describing the stakeholder perspectives of barriers and facilitators.Results Twenty-two studies were included from the 3368 records identified. Studies explored older adult, caregiver, healthcare professional, and administrative staff perspectives. Twenty nine of 34 review findings (85%) were graded as having high or moderate confidence. Key factors salient to older adults related to clinical conditions and socio-cultural factors, digital literacy, access to digital technology, and user interface. Factors salient to healthcare professionals related to resource availability to collect and use PRMs, and value of PRMs collection and use.Conclusion Future efforts to implement electronic collection and use of PRMs in older adults' care should consider addressing the barriers, facilitators, and key theoretical domains identified in this review. Older adults are more likely to adopt electronic completion of PRMs when barriers associated with digital technology access, digital literacy, and user interface are addressed. Future research should explore the perspectives of other stakeholders, including those of organizational leaders, digital technology developers and implementation specialists, in various healthcare settings and explore factors influencing implementation of PREMs.PROSPERO registration number CRD42022295894 Older adults are likely to have high care needs. Health outcomes and experiences can inform these care needs. Surveys can be used to collect health outcomes and experiences. Health care services have used paper surveys. It might be better to use electronic surveys. It saves time and cost for health care services. This study reviewed factors affecting use of electronic surveys. We included research findings from qualitative studies. These studies gathered views of older adults, carers, and health care staff. Many factors affect older adults' use of electronic surveys. Older adults need access to technology. Knowledge on how to use technology was important. Technology should be easy to use. Future work should research use of electronic surveys in different health care settings.
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Growing the peer workforce in rural mental health and social and emotional well-being services: A scoping review of the literature.
Introduction: Growing the mental health peer workforce holds promise for rural communities, but we currently lack an understanding of the guidance available to support the development, implementation and sustainability of this workforce in rural settings. Objective: Study aims are to: (1) determine the extent and nature of the literature that provides guidance for growing the peer workforce in rural mental health services; and (2) identify and explore any guidance relevant to rural peer work services dedicated to First Nations communities, including those promoting social and emotional well-being within this body of literature. Design: A scoping review method was employed to identify relevant peer-reviewed and grey literature published between 2013 and 2022 across PsychInfo, Medline, Embase and CINAHL, Scopus and Informit HealthInfoNet databases, as well as targeted organisation websites and Google Advanced Search. Findings: A total of 26 unique studies/projects were included from the US, UK, Canada and Australia with public mental health, non-government/for purpose and private sector service settings represented in the literature. Grey literature, such as reports of evaluations and frameworks, formed the majority of included texts. While there is a lesser volume of rurally focused literature relative to the general peer work literature, this is a rich body of knowledge, which includes guidance concerning services dedicated to First Nations communities. Via synthesis critical considerations were identified for the development, implementation and sustainability of peer work in rural mental health services across six domains: 'Working with community members and stakeholders', 'Organisational culture and governance', Working with others and in teams, Professional expertise and experience, Being part of and working in the community and 'Local mental health services capacity'. Discussion: While there are considerations relevant across a range of settings, the domains of: 'working with community members and stakeholders', 'being part of and working in the community' and 'local mental health services capacity', capture additional, distinct and nuanced challenges and opportunities for growing the peer work in rural services. Conclusion: The literature offers insights valuable for service planning, policy development and the allocation of resources to support rural peer workforce growth.
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Parents' Experiences of Accessing Mental Health Services for Their Adolescents With Mental Health Challenges: A Scoping Review.
Aim: To analyse the literature on parents' experiences of accessing mental health services with their adolescents for mental health challenges in Ireland. Background: Health systems globally have inadequately addressed mental health service needs resulting in notable gaps between population needs and access to adolescent mental health services. Methods: This scoping review followed Arksey and O'Malley's six-stage framework and PRISMA-ScR reporting guidelines. Five electronic databases SocINDEX, MEDLINE, CINHAL, Scopus and EBSCO were searched and reference lists screened 2015-2024. Results: Twenty-three studies were included. Applying Braun and Clarke's thematic analysis identified three themes: adolescent community mental health services for adolescents with mental health challenges, accessing mental healthcare services via emergeny departments for adolescents with mental health challenges and parents' experiences of accessing mental health services for their adolescents with mental health challenges. Conclusion: Parents' experiences of accessing mental health services for their adolescents are not fully understood, and further research is required to map key concepts to inform practice and policymaking. Relevance to clinical practice: The findings from this scoping review highlight challenges for adolescent mental health services in Ireland and internationally. Heightening awareness of these issues is necessary to improve the clinical practice of nurses. No patient or public contribution: This was a scoping review study.
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The use of patient-reported outcome and experience measures for health policy purposes: A scoping review in oncology
The systematic use of patient-reported measures (PRMs) [i.e., patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs)] is advocated as an effective way to improve care practices. However, whether PRMs can lead to the performance assessment of healthcare organisations (HCOs) through valid quality indicators (QIs) for national purposes (i.e., public reporting and paying for performance) is open to debate. This study undertakes a scoping review to examine the use of PRMs as QIs for health policy purposes and to identify the challenges faced in the emblematic case of oncology. According to PRISMA guidelines, published papers, websites and reports published by national and international initiatives were analysed using five online databases (Web of Science, Scopus, PubMed, JSTOR and Google Advanced Search), and then studied using the same keywords. We selected 61 articles and 19 websites/reports and identified 29 PREMs and 48 PROMs from 14 countries and two international initiatives that routinely used them as QIs for HCOs’ comparisons. Four types of barriers to this specific use were identified relating to the definition of a standard set, scientific soundness, data collection, and the actionability of such measures. Despite current developments, different barriers still must be overcome before PRMs can be used for health policy purposes in oncology. Future research is needed to ensure that valid QIs related to PRMs are applied at a national level.
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Veterans Health Administration (VA) vs. non-VA healthcare quality: A systematic review
BACKGROUND: The Veterans Health Administration (VA) serves Veterans in the nation's largest integrated healthcare system. VA seeks to provide high quality of healthcare to Veterans, but due to the VA Choice and MISSION Acts, VA increasingly pays for care outside of its system in the community. This systematic review compares care provided in VA and non-VA settings, and includes published studies from 2015 to 2023, updating 2 prior systematic reviews on this topic. METHODS: We searched PubMed, Web of Science, and PsychINFO from 2015 to 2023 for published literature comparing VA and non-VA care, including VA-paid community care. Records were included at the abstract or full-text level if they compared VA medical care with care provided in other healthcare systems, and included clinical quality, safety, access, patient experience, efficiency (cost), or equity outcomes. Data from included studies was abstracted by two independent reviewers, with disagreements resolved by consensus. Results were synthesized narratively and via graphical evidence maps. RESULTS: Thirty-seven studies were included after screening 2415 titles. Twelve studies compared VA and VA-paid community care. Most studies assessed clinical quality and safety, and studies of access were second most common. Only six studies assessed patient experience and six assessed cost or efficiency. Clinical quality and safety of VA care was better than or equal to non-VA care in most studies. Patient experience in VA care was better than or equal to experience in non-VA care in all studies, but access and cost/efficiency outcomes were mixed. DISCUSSION: VA care is consistently as good as or better than non-VA care in terms of clinical quality and safety. Access, cost/efficiency, and patient experience between the two systems are not well studied. Further research is needed on these outcomes and on services widely used by Veterans in VA-paid community care, like physical medicine and rehabilitation.
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Molecular testing for thyroid nodules with atypical cells of indeterminate significance
Background: The thyroid is a gland in the lower neck that is responsible for secreting hormones related to growth and metabolism. A cancer growth in the thyroid can spread to other parts of the body, but most thyroid nodules (growths) are benign, and some types of thyroid cancer are nonaggressive and can be managed with active surveillance only. We conducted a health technology assessment of molecular testing in people with thyroid nodules of indeterminate cytology, which included an evaluation of diagnostic accuracy, clinical utility, cost-effectiveness, the budget impact of publicly funding molecular testing, and patient preferences and values. Methods: We performed a systematic literature search of the clinical evidence. We assessed the risk of bias of each included study using the Risk of Bias Among Systematic Review (ROBIS) tool for systematic reviews, the Quality Assessment of Diagnostic Accuracy Studies 2 (QUADAS-2) assessment for primary studies that evaluated diagnostic accuracy, and the Risk of Bias tool for Non-randomized Studies (RoBANS) for primary studies that evaluated clinical utility. We evaluated the quality of the body of evidence according to the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) Working Group criteria. We performed a systematic economic literature review and conducted cost-effectiveness and cost-utility analyses with a 5-year time horizon from the Ontario Ministry of Health perspective. We also analyzed the budget impact of publicly funding molecular testing in people with thyroid nodules of indeterminate cytology in Ontario. To contextualize the potential value of molecular testing in people with thyroid nodules of indeterminate cytology, we spoke to people with thyroid nodules. Results: In the clinical evidence review, we included one systematic review, which contained eight relevant primary studies. Using molecular testing to support the rule-out of cancer in thyroid nodules of indeterminate significance may reduce the number of unnecessary surgeries. For diagnostic accuracy, molecular testing for a diagnosis of malignancy in a nodule of indeterminate significance had a sensitivity of 91% to 94% and a specificity of 68% to 82% (GRADE: Low). As well, lower rates of surgical resections were reported in nodules of indeterminate cytology (GRADE: Very Low). Compared to diagnostic lobectomy, we found that molecular testing would increase the probability of predicting a correct diagnosis, reduce the probability of unnecessary surgery, and lead to a slight improvement in quality-adjusted life-years (QALYs), but it would increase costs. The resulting incremental cost-effectiveness ratio was $220,572 to $298,653 per QALY gained. At the commonly used willingness-to-pay values of $50,000 and $100,000 per QALY gained, molecular testing was unlikely to be cost-effective (probability of molecular testing being cost-effective was less than 50%). Publicly funding molecular testing in Ontario over the next 5 years would lead to an additional cost of $6.24 million. People with thyroid nodules of indeterminate cytology reported on the benefits and drawbacks of molecular testing, as well as barriers to accessing and choosing to undergo molecular testing. Conclusions: For thyroid nodules of indeterminate cytology, molecular testing may have diagnostic accuracy as a rule-out test, and it may result in fewer nodule resections than usual care (no molecular testing). For people with thyroid nodules of indeterminate cytology, molecular testing at the current list price is unlikely to be cost-effective compared to diagnostic lobectomy. Publicly funding molecular testing in Ontario would cost about $6.24 million over the next 5 years. People with thyroid nodules of indeterminate cytology valued the information that could be provided by molecular testing, but they expressed concern about the time required to obtain results, especially if the findings were not conclusive or useful for treatment decision-making.
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Clinical Epidemiology in China series. Paper 2: Promoting GRADE at the national level: The experience from China
Objective: To share the experience of promoting GRADE in China. Study design and setting: We designed the study and collected data on the following three aspects of the GRADE in China: the key activities related to GRADE, the main achievements of the GRADE, and potential challenges and future opportunities. Results: Three GRADE centres have been established in China since 2011. Seventeen articles of the GRADE working group have been translated and published in Chinese, and 31 articles have been written by Chinese scientists in Chinese to introduce and interpret the GRADE approach so far. More than 50 GRADE workshops and meetings have been held by GRADE centres in China, covering two-thirds of all provinces and autonomous regions of China. The percentages of societies from the Chinese Medical Association (CMA) and the Chinese Medical Doctor Association (CMDA) that used the GRADE system to develop guidelines were 30% and 18%, respectively. Conclusion: Over the past decade, China has made progress in promoting the GRADE system and Chinese GRADE centres have made a significant contribution.
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Registered Nurses' experiences of psychological well-being and ill-being in their first year of practice: A qualitative meta-synthesis.
Aim: To synthesize Registered Nurses' self-reported perceptions and experiences of psychological well-being and ill-being during their first year of practice. Design: Qualitative meta-synthesis. Data sources: Databases included Cumulative Index of Nursing and Allied Health Literature, Excerpta Medica database, Medical Literature Analysis and Retrieval System Online and Psychological Information. Qualitative studies were considered for inclusion if published in English, from 2009-2019, reporting primary data analysis including psychological well-being and ill-being experiences of graduate nurses in first year of practice. Review methods: Qualitative studies were systematically identified and critically appraised. A meta-synthesis was applied using an open card sort technique to organize empirical data into a matrix of graduate nurses' voices of psychological well-being and ill-being. Results: Twenty-two studies were included. Analysis revealed patterns of positive experiences and emotions. These included feeling valued and part of the team and learning from and feeling supported by other nurses. Negative experiences and emotions such as feeling overwhelmed, stressed, alone and inadequately prepared were also identified. Conclusion: Graduate nurses' perceptions and experiences of their psychological well-being and ill-being revealed both positive and negative dimensions during this transition period. Specific examples of strategies that may promote transition nurses' well-being and prevent ill-being were identified such as social connection and support. Impact: Increasing the numbers of new nursing graduates world-wide is required to strengthen health systems. Developing strategies to retain these graduates in the workforce is paramount. This review found some graduate nurses experience the transition period as a time of personal growth and fulfilment, for others this period was a stressor. These findings were illustrated in a model of 'ways to well-being'. The potential for knowledge translation of this model extends from graduate nurses as individuals, to nurse entry to practice programs and graduate nurse programs, to organizational policy targeting future health workforce. Systematic review registration number: CRD42020148812.
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Experiences and unmet needs of lesbian, gay and bisexual people with cancer care: A systematic review and meta-synthesis
OBJECTIVES: To explore the cancer care experiences and unmet needs of people who identify as a sexual or gender minority. METHODS: A qualitative systematic review and meta-synthesis was undertaken based on a registered protocol. Following literature searching and study selection, study quality was examined using the Critical Appraisal Skill Programme Checklist. Qualitative data were extracted verbatim from included studies and synthesised using thematic analysis. RESULTS: Fifteen studies that included lesbian, gay and bisexual (LGB) people living with or beyond cancer were included in the review. Studies including gender minorities were not identified. The majority of study participants were sexual minority women with breast cancer or sexual minority men with prostate cancer. Meta-synthesis of 106 individual findings generated six overarching themes pertaining to sexual orientation disclosure, experiences and fear of homophobia, positive and negative healthcare professional behaviours, heterocentric systems and care, inadequacy of available support groups, and unmet needs for patient-centred care and LGB-specific information. LGB people often reported feelings of anxiety, invisibility, isolation and frustration throughout the cancer care continuum. CONCLUSIONS: Analysis of the experiences of LGB people with cancer care shows that LGB people face numerous challenges due to their sexual orientation and receive care that does not adequately address their needs. Training and education of healthcare professionals is strongly recommended to address some of these challenges and practice gaps. Culturally appropriate care includes avoiding heterosexual assumptions, use of inclusive language, the provision of tailored information and involving partners in care.
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Understanding heart failure; explaining telehealth - a hermeneutic systematic review.
Background: Enthusiasts for telehealth extol its potential for supporting heart failure management. But randomised trials have been slow to recruit and produced conflicting findings; real-world roll-out has been slow. We sought to inform policy by making sense of a complex literature on heart failure and its remote management. Methods: Through database searching and citation tracking, we identified 7 systematic reviews of systematic reviews, 32 systematic reviews (including 17 meta-analyses and 8 qualitative reviews); six mega-trials and over 60 additional relevant empirical studies and commentaries. We synthesised these using Boell's hermeneutic methodology for systematic review, which emphasises the quest for understanding. Results: Heart failure is a complex and serious condition with frequent co-morbidity and diverse manifestations including severe tiredness. Patients are often frightened, bewildered, socially isolated and variably able to self-manage. Remote monitoring technologies are many and varied; they create new forms of knowledge and new possibilities for care but require fundamental changes to clinical roles and service models and place substantial burdens on patients, carers and staff. The policy innovation of remote biomarker monitoring enabling timely adjustment of medication, mediated by "activated" patients, is based on a modernist vision of efficient, rational, technology-mediated and guideline-driven ("cold") care. It contrasts with relationship-based ("warm") care valued by some clinicians and by patients who are older, sicker and less technically savvy. Limited uptake of telehealth can be analysed in terms of key tensions: between tidy, "textbook" heart failure and the reality of multiple comorbidities; between basic and intensive telehealth; between activated, well-supported patients and vulnerable, unsupported ones; between "cold" and "warm" telehealth; and between fixed and agile care programmes. Conclusion: The limited adoption of telehealth for heart failure has complex clinical, professional and institutional causes, which are unlikely to be elucidated by adding more randomised trials of technology-on versus technology-off to an already-crowded literature. An alternative approach is proposed, based on naturalistic study designs, application of social and organisational theory, and co-design of new service models based on socio-technical principles. Conventional systematic reviews (whose goal is synthesising data) can be usefully supplemented by hermeneutic reviews (whose goal is deepening understanding).
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Experiences of cancer patients in a patient navigation program: A qualitative systematic review
BACKGROUND: A patient navigation program is a model of care which entails trained personnel providing individualized and assistive care to adult oncology patients to help the patients overcome barriers. A further aim of the program is to achieve continuity of care as patients experience the complex healthcare system. Patient navigation is a new model of care in many institutions, and as such the experiences of patients in the patient navigation program remains inconclusive. OBJECTIVES: The review seeks to understand the experiences of adult patients in patient navigation programs and how patient navigators impact the challenges patients encounter in the cancer care continuum. INCLUSION CRITERIA: TYPES OF PARTICIPANTS: Participants of interest were adult cancer patients more than 18 years of age who are receiving or have received cancer care and are in a patient navigation program or had been in a hospital patient navigation program. Types of intervention(s)/phenomena of interest: The phenomenon of interest was the experiences of adult cancer patients who used patient navigation programs in hospital including how patient navigators impact on the challenges patients encounter in the cancer care continuum. Types of studies: This review considered studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, action research and exploratory studies. CONTEXT: The review includes patient navigation programs within a hospital setting. Types of outcome: The review sought to understand the experiences of patients with cancer in patient navigation programs in the hospital. SEARCH STRATEGY: A three-step search strategy was used. An initial search to identify keywords was undertaken in PubMed and Science Direct followed by an expanded search using all identified keywords and index terms specific to each included database. The reference lists of included papers were then searched for any other relevant studies. METHODOLOGICAL QUALITY: Each paper was assessed independently by two reviewers for methodological quality using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Any disagreements that arose between the reviewers were resolved through discussion. DATA COLLECTION: Data extraction and synthesis was conducted using standardized data extraction and synthesis tools from JBI-QARI. DATA SYNTHESIS: The 17 unequivocal and credible findings of included studies were categorized according to similarity of meaning and developed into three synthesized findings. RESULTS: Three papers were included in the review. The three synthesized findings from the 17 findings extracted from the papers were: (1) Emotional empowerment: patient navigators need to be present with patients at key phases of the cancer care continuum and assure patients of their accessibility; (2) Knowledge empowerment: patient navigators need to explore and manage the needs and expectations of patients so that the healthcare team and patient have the same understanding of treatment goals and plans; and (3) Bridging the gaps: patient navigators need to ensure practical assistance is provided for patients to ensure continuity of care even at the completion of the treatment regimen. CONCLUSIONS: The presence of a patient navigator provides strong support to the patients when experiencing disruption from cancer diagnosis and treatment. The emotional isolation they experience lessens with the assurance that there is always a consistent and constant contact point they can fall back on. The logistic and practical help given by the navigators allows patients to take time to process information and make sense of what is happening
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Effectiveness of psychosocial intervention for children and adolescents with comorbid problems: A systematic review
Background: Comorbidity is common among child clinical samples. Reviews on effective intervention for comorbid problems are lacking. Method: Based on a literature search of three databases (PsycINFO, MEDLINE and ERIC), initial data analysis was carried out on 865 studies; of these,10 randomised trials fully met study inclusion criteria and were subject to final analysis, with quality assessments and effect sizes calculated. Results: Overall, effect sizes for externalising (M = 1.12) and internalising (M = 1.09) outcomes were large. Effect sizes were large for family-based (M = 1.80) compared to individual (M = 0.78) and group-based (M = 0.54) interventions. Studies with homotypic comorbidity (M= 1.18) displayed larger treatment effect sizes than ones with heterotypic comorbidity (M = 0.54). Conclusions: While the overall quality ratings of the reviewed studies varied from mediocre to good, with a variety of measures used across studies to assess the same outcomes, findings suggest that current interventions are effective for reducing internalising and externalising problems in children with comorbidity. More substantive evidence for the beneficial effects of psychosocial interventions for children with comorbid problems may arise as more robust studies, which more explicitly address and describe comorbidity, become available.
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