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  1. Article ; Online: Triadic communication with teenagers and young adults with cancer: a systematic literature review - 'make me feel like I'm not the third person'.

    Critoph, Deborah J / Taylor, Rachel M / Spathis, Anna / Duschinsky, Robbie / Hatcher, Helen / Clyne, Ella / Kuhn, Isla / Smith, Luke A M

    BMJ open

    2024  Volume 14, Issue 2, Page(s) e080024

    Abstract: Objectives: Clinical communication needs of teenagers and young adults with cancer (TYACs) are increasingly recognised to differ significantly from younger children and older adults. We sought to understand who is present with TYACs, TYACs' experiences ... ...

    Abstract Objectives: Clinical communication needs of teenagers and young adults with cancer (TYACs) are increasingly recognised to differ significantly from younger children and older adults. We sought to understand who is present with TYACs, TYACs' experiences of triadic communication and its impact. We generated three research questions to focus this review: (1) Who is present with TYACs in healthcare consultations/communication?, (2) What are TYACs' experiences of communication with the supporter present? and (3) What is the impact of a TYAC's supporter being present in the communication?
    Design: Systematic review with narrative synthesis.
    Data sources: The search was conducted across six databases: Medline, CINAHL, Embase, PsycINFO, Web of Science and AMED for all publications up to December 2023.
    Eligibility criteria for selecting studies: Included papers were empirical research published after 2005; participants had malignant disease, diagnosed aged 13-24 years (for over 50% of participants); the research addressed any area of clinical communication.
    Data extraction and synthesis: Three independent reviewers undertook full-text screening. A review-specific data extraction form was used to record participant characteristics and methods from each included paper and results relevant to the three review questions.
    Results: A total of 8480 studies were identified in the search, of which 36 fulfilled the inclusion criteria. We found that mothers were the most common supporter present in clinical communication encounters. TYACs' experiences of triadic communication are paradoxical in nature-the supporter can help or hinder the involvement of the young person in care-related communication. Overall, young people are not included in clinical communication and decisions at their preferred level.
    Conclusion: Triadic communication in TYACs' care is common, complex and dynamic. Due to the degree of challenge and nuances raised, healthcare professionals need further training on effective triadic communication.
    Prospero registration number: CRD42022374528.
    MeSH term(s) Child ; Humans ; Adolescent ; Young Adult ; Aged ; Qualitative Research ; Health Personnel ; Communication ; Neoplasms/therapy ; Neoplasms/diagnosis
    Language English
    Publishing date 2024-02-17
    Publishing country England
    Document type Systematic Review ; Journal Article
    ZDB-ID 2599832-8
    ISSN 2044-6055 ; 2044-6055
    ISSN (online) 2044-6055
    ISSN 2044-6055
    DOI 10.1136/bmjopen-2023-080024
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Anticipatory prescribing in community end-of-life care: systematic review and narrative synthesis of the evidence since 2017.

    Bowers, Ben / Antunes, Bárbara Costa Pereira / Etkind, Simon / Hopkins, Sarah A / Winterburn, Isaac / Kuhn, Isla / Pollock, Kristian / Barclay, Stephen

    BMJ supportive & palliative care

    2024  Volume 13, Issue e3, Page(s) e612–e623

    Abstract: Background: The anticipatory prescribing of injectable medications is recommended practice in controlling distressing symptoms in the last days of life. A 2017 systematic review found practice and guidance was based on inadequate evidence. Since then, ... ...

    Abstract Background: The anticipatory prescribing of injectable medications is recommended practice in controlling distressing symptoms in the last days of life. A 2017 systematic review found practice and guidance was based on inadequate evidence. Since then, there has been considerable additional research, warranting a new review.
    Aim: To review the evidence published since 2017 concerning anticipatory prescribing of injectable medications for adults at the end-of-life in the community, to inform practice and guidance.
    Design: Systematic review and narrative synthesis.
    Methods: Nine literature databases were searched from May 2017 to March 2022, alongside reference, citation and journal hand-searches. Gough's Weight of Evidence framework was used to appraise included studies.
    Results: Twenty-eight papers were included in the synthesis. Evidence published since 2017 shows that standardised prescribing of four medications for anticipated symptoms is commonplace in the UK; evidence of practices in other countries is limited. There is limited data on how often medications are administered in the community. Prescriptions are 'accepted' by family caregivers despite inadequate explanations and they generally appreciate having access to medications. Robust evidence of the clinical and cost-effectiveness of anticipatory prescribing remains absent.
    Conclusion: The evidence underpinning anticipatory prescribing practice and policy remains based primarily on healthcare professionals' perceptions that the intervention is reassuring, provides effective, timely symptom relief in the community and prevents crisis hospital admissions. There is still inadequate evidence regarding optimal medications and dose ranges, and the effectiveness of these prescriptions. Patient and family caregiver experiences of anticipatory prescriptions warrant urgent investigation.
    Prospero registration: CRD42016052108.
    MeSH term(s) Humans ; Caregivers ; Hospice Care ; Terminal Care
    Language English
    Publishing date 2024-01-08
    Publishing country England
    Document type Systematic Review ; Journal Article
    ISSN 2045-4368
    ISSN (online) 2045-4368
    DOI 10.1136/spcare-2022-004080
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Population-level interventions for the primary prevention of dementia: a complex evidence review.

    Walsh, Sebastian / Wallace, Lindsay / Kuhn, Isla / Mytton, Oliver / Lafortune, Louise / Wills, Wendy / Mukadam, Naaheed / Brayne, Carol

    EClinicalMedicine

    2024  Volume 70, Page(s) 102538

    Abstract: Dementia risk reduction is a global public health priority. Existing primary prevention approaches have favored individual-level interventions, with a research and policy gap for population-level interventions. We conducted a complex, multi-stage, ... ...

    Abstract Dementia risk reduction is a global public health priority. Existing primary prevention approaches have favored individual-level interventions, with a research and policy gap for population-level interventions. We conducted a complex, multi-stage, evidence review to identify empirical evidence on population-level interventions for each of the modifiable risk factors identified by the Lancet Commission on dementia (2020). Through a comprehensive series of targeted searches, we identified 4604 articles, of which 135 met our inclusion criteria. We synthesized evidence from multiple sources, including existing non-communicable disease prevention frameworks, and graded the consistency and comprehensiveness of evidence. We derived a population-level intervention framework for dementia risk reduction, containing 26 high- and moderate-confidence policy recommendations, supported by relevant information on effect sizes, sources of evidence, contextual information, and implementation guidance. This review provides policymakers with the evidence they need, in a useable format, to address this critical public health policy gap.
    Funding: SW is funded by a National Institute for Health and Care Research (NIHR) Doctoral Fellowship. WW and LF are part funded by the NIHR Applied Research Collaboration East of England. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
    Language English
    Publishing date 2024-03-10
    Publishing country England
    Document type Journal Article ; Review
    ISSN 2589-5370
    ISSN (online) 2589-5370
    DOI 10.1016/j.eclinm.2024.102538
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Quality and reporting of large-scale improvement programmes: a review of maternity initiatives in the English NHS, 2010-2023.

    McGowan, James / Attal, Bothaina / Kuhn, Isla / Hinton, Lisa / Draycott, Tim / Martin, Graham P / Dixon-Woods, Mary

    BMJ quality & safety

    2024  

    Abstract: Background: Large-scale improvement programmes are a frequent response to quality and safety problems in health systems globally, but have mixed impact. The extent to which they meet criteria for programme quality, particularly in relation to ... ...

    Abstract Background: Large-scale improvement programmes are a frequent response to quality and safety problems in health systems globally, but have mixed impact. The extent to which they meet criteria for programme quality, particularly in relation to transparency of reporting and evaluation, is unclear.
    Aim: To identify large-scale improvement programmes focused on intrapartum care implemented in English National Health Service maternity services in the period 2010-2023, and to conduct a structured quality assessment.
    Methods: We drew on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidance to inform the design and reporting of our study. We identified relevant programmes using multiple search strategies of grey literature, research databases and other sources. Programmes that met a prespecified definition of improvement programme, that focused on intrapartum care and that had a retrievable evaluation report were subject to structured assessment using selected features of programme quality.
    Results: We identified 1434 records via databases and other sources. 14 major initiatives in English maternity services could not be quality assessed due to lack of a retrievable evaluation report. Quality assessment of the 15 improvement programmes meeting our criteria for assessment found highly variable quality and reporting. Programme specification was variable and mostly low quality. Only eight reported the evidence base for their interventions. Description of implementation support was poor and none reported customisation for challenged services. None reported reduction of inequalities as an explicit goal. Only seven made use of explicit patient and public involvement practices, and only six explicitly used published theories/models/frameworks to guide implementation. Programmes varied in their reporting of the planning, scope and design of evaluation, with weak designs evident.
    Conclusions: Poor transparency of reporting and weak or absent evaluation undermine large-scale improvement programmes by limiting learning and accountability. This review indicates important targets for improving quality in large-scale programmes.
    Language English
    Publishing date 2024-02-13
    Publishing country England
    Document type Journal Article
    ZDB-ID 2592909-4
    ISSN 2044-5423 ; 2044-5415
    ISSN (online) 2044-5423
    ISSN 2044-5415
    DOI 10.1136/bmjqs-2023-016606
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 3754: Show issues Location:
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  5. Article ; Online: Is there scope to do better? Clinical communication with adolescents and young adults with cancer-A scoping review.

    Critoph, Deborah J / Cable, Maria / Farmer, Jessica / Hatcher, Helen M / Kuhn, Isla / Taylor, Rachel M / Smith, Luke A M

    Psycho-oncology

    2024  Volume 33, Issue 4, Page(s) e6317

    Abstract: Introduction: How to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK-wide survey of young people with cancer's research priorities, communication was a striking cross-cutting theme. It is ... ...

    Abstract Introduction: How to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK-wide survey of young people with cancer's research priorities, communication was a striking cross-cutting theme. It is increasingly recognised that AYACs have experiences and communication needs that differ significantly from those of younger children and older adults. The purpose of this review is to explore the features of effective clinical communication with AYACs.
    Methods: A literature search was undertaken to identify and map the available evidence using a broad scope to get an overview of the pertinent literature, identify knowledge gaps and clarify concepts. The searches yielded 5825 records, generating 4040 unique articles. These were screened and 71 full articles were read by four researchers with disagreements resolved by discussion leaving 29 included articles. Narrative synthesis was undertaken in relation to each of the research questions.
    Results: Three key themes were identified: being an adolescent/young adult, supporters, and healthcare professionals (HCPs). AYACs need to feel that HCPs understand their unique perspective. They want to be involved, this changes over time and in different contexts. Supporters are a central tenet, are most often parents and undertake several roles which are not always universally supportive. HCPs enable involvement of AYACs, and this needs to be actively promoted. AYACs preference for their level of involvement requires continual assessment. The three themes are interlinked and exist within the wider scope of the triadic encounter and cancer experience.
    Conclusion: Supporters, most often parents were a key feature across the data and were seemingly paradoxical in nature. Triadic communication, the presence of a third person, is a central tenet of communication with AYACs and we propose a conceptual model to represent the nuances, components, and facets of this complex communication.
    MeSH term(s) Child ; Humans ; Adolescent ; Young Adult ; Aged ; Communication ; Narration ; Emotions ; Health Personnel ; Neoplasms/therapy
    Language English
    Publishing date 2024-04-04
    Publishing country England
    Document type Journal Article ; Review
    ZDB-ID 1118536-3
    ISSN 1099-1611 ; 1057-9249
    ISSN (online) 1099-1611
    ISSN 1057-9249
    DOI 10.1002/pon.6317
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    Zs.A 3550: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
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    Jg. 1995 - 2021: Lesesall (2.OG)
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  6. Article ; Online: The use of experimental vignette studies to identify drivers of variations in the delivery of health care: a scoping review.

    Sheringham, Jessica / Kuhn, Isla / Burt, Jenni

    BMC medical research methodology

    2021  Volume 21, Issue 1, Page(s) 81

    Abstract: Background: Identifying how unwarranted variations in healthcare delivery arise is challenging. Experimental vignette studies can help, by isolating and manipulating potential drivers of differences in care. There is a lack of methodological and ... ...

    Abstract Background: Identifying how unwarranted variations in healthcare delivery arise is challenging. Experimental vignette studies can help, by isolating and manipulating potential drivers of differences in care. There is a lack of methodological and practical guidance on how to design and conduct these studies robustly. The aim of this study was to locate, methodologically assess, and synthesise the contribution of experimental vignette studies to the identification of drivers of unwarranted variations in healthcare delivery.
    Methods: We used a scoping review approach. We searched MEDLINE, Embase, Web of Science and CINAHL databases (2007-2019) using terms relating to vignettes and variations in healthcare. We screened title/abstracts and full text to identify studies using experimental vignettes to examine drivers of variations in healthcare delivery. Included papers were assessed against a methodological framework synthesised from vignette study design recommendations within and beyond healthcare.
    Results: We located 21 eligible studies. Study participants were almost exclusively clinicians (18/21). Vignettes were delivered via text (n = 6), pictures (n = 6), video (n = 6) or interactively, using face-to-face, telephone or online simulated consultations (n = 3). Few studies evaluated the credibility of vignettes, and many had flaws in their wider study design. Ten were of good methodological quality. Studies contributed to understanding variations in care, most commonly by testing hypotheses that could not be examined directly using real patients.
    Conclusions: Experimental vignette studies can be an important methodological tool for identifying how unwarranted variations in care can arise. Flaws in study design or conduct can limit their credibility or produce biased results. Their full potential has yet to be realised.
    MeSH term(s) Delivery of Health Care ; Humans ; MEDLINE ; Referral and Consultation ; Telephone ; Text Messaging
    Language English
    Publishing date 2021-04-22
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Review
    ISSN 1471-2288
    ISSN (online) 1471-2288
    DOI 10.1186/s12874-021-01247-4
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Supporting bereavement and complicated grief in primary care: a realist review.

    Pearce, Caroline / Wong, Geoff / Kuhn, Isla / Barclay, Stephen

    BJGP open

    2021  Volume 5, Issue 3

    Abstract: Background: Bereavement can have significant impacts on physical and mental health, and a minority of people experience complicated and prolonged grief responses. Primary care is ideally situated to offer bereavement care, yet UK provision remains ... ...

    Abstract Background: Bereavement can have significant impacts on physical and mental health, and a minority of people experience complicated and prolonged grief responses. Primary care is ideally situated to offer bereavement care, yet UK provision remains variable and practitioners feel uncertain how best to support bereaved patients.
    Aim: To identify what works, how, and for whom, in the management of complicated grief (CG) in primary care.
    Design & setting: A review of evidence on the management of CG and bereavement in UK primary care settings.
    Method: A realist approach was taken that aims to provide causal explanations through the generation and articulation of contexts, mechanisms, and outcomes.
    Results: Forty-two articles were included. Evidence on the primary care management of complicated or prolonged grief was limited. GPs and nurses view bereavement support as part of their role, yet experience uncertainty over the appropriate extent of their involvement. Patients and clinicians often have differing views on the role of primary care in bereavement. Training in bereavement, local systems for reporting deaths, practitioner time, and resources can assist or hinder bereavement care provision. Practitioners find bereavement care can be emotionally challenging. Understanding patients' needs can encourage a proactive response and help identify appropriate support.
    Conclusion: Bereavement care in primary care remains variable and practitioners feel unprepared to provide appropriate bereavement care. Patients at higher risk of complicated or prolonged grief may fail to receive the support they need from primary care. Further research is required to address the potential unmet needs of bereaved patients.
    Language English
    Publishing date 2021-06-30
    Publishing country England
    Document type Journal Article
    ISSN 2398-3795
    ISSN (online) 2398-3795
    DOI 10.3399/BJGPO.2021.0008
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  8. Article ; Online: A scoping review of case law relating to support and treatment for people with Prader-Willi Syndrome.

    Murray, Anna / Kuhn, Isla / Gulati, Gautam / Fistein, Elizabeth

    International journal of law and psychiatry

    2021  Volume 78, Page(s) 101733

    Abstract: Background: Prader-Willi Syndrome (PWS) is a complex multisystem genetic disorder associated with several challenges for people with PWS themselves, and for their families and care givers. Support around access to food is a particular issue due to ... ...

    Abstract Background: Prader-Willi Syndrome (PWS) is a complex multisystem genetic disorder associated with several challenges for people with PWS themselves, and for their families and care givers. Support around access to food is a particular issue due to impaired satiety and, because of this, people with PWS eat excessive amounts of food (hyperphagia). Together with other aspects of the PWS phenotype including, in many cases, a reduced sensitivity to pain, hyperphagia results in life-threatening obesity and life-shortening complications for some people with PWS. Restrictions to liberty and/or access to food raise important legal and ethical considerations in the clinical management of children and adults with PWS. Particularly where disagreements arise and, in the absence of comprehensive guidance for care providers, the courts may be called upon to resolve these difficult issues.
    Aims: 1) To review case-law from English-speaking common law jurisdictions concerning support arrangements for people with PWS with a view to identifying issues that have required the intervention of the courts. 2) To identify principles on which to base clinical guidelines relating to the issues identified, ensuring that such guidelines are consistent with ethical and human rights imperatives.
    Methods: Westlaw, Westlaw AU, and Lexis Nexis were searched for case law concerning the treatment or support of a person with PWS.
    Results: Fifteen cases from jurisdictions in Australia, New Zealand, Canada, the United Kingdom and the United States of America met inclusion criteria. Areas requiring judicial decision making included a) detention in psychiatric hospital; b) support in least restrictive environments c) eligibility for support services; d) guardianship; e) access to special education. Judicial decisions are discussed in the context of the United Nations' Convention on the Rights of Persons with Disabilities.
    MeSH term(s) Australia ; Humans ; Hyperphagia ; New Zealand ; Prader-Willi Syndrome/therapy ; United Kingdom
    Language English
    Publishing date 2021-09-01
    Publishing country Netherlands
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Review
    ZDB-ID 304429-4
    ISSN 1873-6386 ; 0160-2527
    ISSN (online) 1873-6386
    ISSN 0160-2527
    DOI 10.1016/j.ijlp.2021.101733
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    In stock of ZB MED Cologne/Königswinter

    Zs.A 1430: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
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    Jg. 1995 - 2021: Lesesall (1.OG)
    ab Jg. 2022: Lesesaal (EG)

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  9. Article ; Online: A systematic review of patient access to medical records in the acute setting: practicalities, perspectives and ethical consequences.

    D'Costa, Stephanie N / Kuhn, Isla L / Fritz, Zoë

    BMC medical ethics

    2020  Volume 21, Issue 1, Page(s) 18

    Abstract: Background: Internationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with ... ...

    Abstract Background: Internationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor an ethical analysis of the issues involved in such a change in process.
    Methods: This study employed a systematic review framework in two stems, to integrate literature identified from two searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient access to records and its effects on communication and trust within the doctor-patient relationship; and (2) patient access to medical records and the ethical implications identified). The qualitative and quantitative results of both searches were integrated and critically analysed.
    Results: 3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identified for review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to giving information to patients - almost exclusively verbally - is insufficient; that patient access to notes is a welcome next step for patient-centred care, but that simply allowing full access, without explanation or summary, is also insufficient. Several ethical implications need to be considered: increased information could improve patient trust and knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients have conflicting views on how much information should be shared and when; sharing written information might increase the already significant disparity in access to health care, and have unforeseen opportunity costs. The impact on medical practice of sharing notes in real time will also need to be evaluated.
    Conclusions: The review presents encouraging data to support patient access to medical notes. However, sharing information is a critical part of clinical practice; changing how it is done could have significant empirical and ethical impacts; any changes should be carefully evaluated.
    MeSH term(s) Access to Information/ethics ; Hospitalization ; Humans ; Medical Records ; Personal Autonomy
    Language English
    Publishing date 2020-03-02
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Systematic Review
    ZDB-ID 2041552-7
    ISSN 1472-6939 ; 1472-6939
    ISSN (online) 1472-6939
    ISSN 1472-6939
    DOI 10.1186/s12910-020-0459-6
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article ; Online: Supportive and palliative care of adults with respiratory problems experiencing structural vulnerability from homelessness, prison or other criminal justice system involvement.

    Gardener, Carole / Kuhn, Isla / Micklewright, Kerry / Farquhar, Morag

    Current opinion in supportive and palliative care

    2020  Volume 14, Issue 3, Page(s) 197–205

    Abstract: Purpose of review: This review seeks to identify the current prevalence of potentially life-limiting respiratory conditions among those who have experienced homelessness, incarceration or had criminal justice involvement, and current developments in, ... ...

    Abstract Purpose of review: This review seeks to identify the current prevalence of potentially life-limiting respiratory conditions among those who have experienced homelessness, incarceration or had criminal justice involvement, and current developments in, and barriers to, delivery of supportive and palliative respiratory care to these populations. These structurally vulnerable populations are known to be growing, their health behaviours more risky, and their morbidity and mortality higher, with evidence of accelerated ageing.
    Recent findings: Most studies identified investigated prevalence of respiratory conditions, which were found to be high. In contrast, only one study directly explored supportive and palliative care (in a prison population) and none considered or addressed palliative and end-of-life needs of these populations, or mechanisms to address them. There was an absence of qualitative work and studies of the impact on, or role of, family, friends or informal networks.
    Summary: There is a need for evidence-based interventions to reduce the risk of communicable respiratory conditions and a greater understanding of disease trajectories and management for these vulnerable populations, including provision of accessible appropriate supportive, palliative and end-of-life care.
    MeSH term(s) Asthma/epidemiology ; Criminal Law ; Health Behavior ; Health Services Accessibility/organization & administration ; Homeless Persons ; Humans ; Palliative Care/organization & administration ; Prisoners ; Pulmonary Disease, Chronic Obstructive/epidemiology ; Respiration Disorders/epidemiology ; Respiratory Tract Infections/epidemiology ; Smoking/epidemiology ; Terminal Care/organization & administration ; Tuberculosis, Pulmonary/epidemiology
    Language English
    Publishing date 2020-07-23
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Review
    ZDB-ID 2633726-5
    ISSN 1751-4266 ; 1751-4258
    ISSN (online) 1751-4266
    ISSN 1751-4258
    DOI 10.1097/SPC.0000000000000511
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 6946: Show issues Location:
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