69 research outputs found

    Gaps in understanding the experiences of homecare workers providing care for people with dementia up to the end of life: A systematic review

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    This systematic review of the literature explores the perspectives and experiences of homecare workers providing care for people with dementia living at home up to the end of life. A search of major English language databases in 2016 identified 378 studies on the topic, of which 12 met the inclusion criteria. No empirical research was identified that specifically addressed the research question. However, synthesis of the findings from the broader literature revealed three overarching themes: value of job role, emotional labour and poor information and communication. The role of homecare workers supporting a person with dementia up to the end of life remains under-researched, with unmet needs for informational, technical and emotional support reported. The effective components of training and support are yet to be identified

    20 Years Of Progress In Dengue Hemorrhagic Fever And Other Arboviral Diseases Research

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    Throughout the 20 year history of U.S. Naval Medical Research Unit No. 2 Detachment (NAMRU), many viruses and viral diseases have been studied. The greatest emphasis has been in the field of arboviruses, specifically dengue virus, chikungunya virus, and Japanese B encephalitis virus. The initial focus of the work was to define the extent of the threat posed by these viruses. Studies were conducted to determine antibody prevalence, and to determine the etiologies of infectious febrile disease in hospitalized patients. Later the work advanced into more specific areas, especially the entomologic and clinical components of these viruses. Little was known of the incidence or kind of arbovirus infections in Indonesia when NAMRU was established. Previous serological studies had used the cross reactive haemagglutination assay. Green et al. in 1973 provided convincing serological evidence of infections with chikungunya virus and group B arboviruses by using the specific virus neutralization assay. These results demonstrated the need for further studies to isolate the causative agent, to describe the epidemiology, and to investigate the clinical features of the associated disease

    Patients' and carers' views on communication and information provision when undergoing assessments in memory services

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    Objectives: To explore patients' and carers' views on what constitutes high-quality communication and information provision during diagnostic assessment in memory clinic services in three areas of England. Methods: Interviews with 27 people with cognitive impairment (13 with confirmed dementia) and 26 carers (20 matched pairs). Interviews continued until theoretical saturation was reached. Interview transcripts were subject to constant comparative analysis; data interpretation occurred in 'data clinics'. Results: People with memory problems undergoing assessment often have unmet information needs, especially patients with a diagnosis other than Alzheimer's disease and those who do not receive a diagnosis. Patients wish to be kept informed about both the assessment and its outcomes. Some have unrealistic expectations of the process (expecting assessment and diagnosis to be complete in two weeks) and some experience what appear to be long delays (over 12 months) in receiving results. Most appreciated clear and honest communication about any diagnosis. Post-diagnostic groups, organized by local memory services, afford opportunities to learn practical strategies and gain informal peer support. Voluntary organizations may be an essential source of information. Conclusions: Communication and information need improvement for patients undergoing assessment for possible dementia, especially for those considered unlikely to benefit from medication and those with mild cognitive impairment. © The Author(s) 2013

    Social prescribing for people living with dementia (PLWD) and their carers: what works, for whom, under what circumstances and why – protocol for a complex intervention systematic review

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    \ua9 Author(s) (or their employer(s)) 2024.Introduction Dementia is a complex medical condition that poses significant challenges to healthcare systems and support services. People living with dementia (PLWD) and their carers experience complex needs often exacerbated by social isolation and challenges in accessing support. Social prescribing (SP) seeks to enable PLWD and their carers to access community and voluntary sector resources to support them address such needs. Existing research, however, does not describe what SP interventions are currently in place in dementia care. Little is known about the needs these interventions are designed to address, the reasons that lead PLWD and their carers to participate in them, their effectiveness and the extent to which they could increase positive health outcomes if adopted and how. Methods and analysis A complex intervention systematic review of SP for PLWD and/or their carers will be conducted using an iterative logic model approach. Six electronic (MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus and Cochrane/CENTRAL) and two grey literature databases (EThOS and CORE) were searched for publications between 1 January 2003 and June 2023, supplemented by handsearching of reference lists of included studies. Study selection, data extraction and risk of bias assessment, using Gough’s Weight of Evidence Framework, will be independently performed by two reviewers. A narrative approach will be employed to synthesise and report quantitative and qualitative data. Reporting will be informed by the Preferred Reporting Items for Systematic Review and Meta-Analysis Complex Interventions extension statement and checklist. Ethics and dissemination No ethical approval is required due to this systematic review operating only with secondary sources. Findings will be disseminated through peer-reviewed publications, conference presentations and meetings with key stakeholders including healthcare professionals, patient and carer groups, community organisations (eg, the Social Prescribing Network and the Evidence Collaborative at the National Academy for Social Prescribing), policymakers and funding bodies. PROSPERO registration number CRD42023428625

    The evaluation of a healthcare passport to improve quality of care and communication for people living with dementia (EQuIP): a protocol paper for a qualitative, longitudinal study

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    Background\ud \ud There is an urgent need for the development of simple communication tools that convey the strengths, assets, and healthcare needs of people living with dementia. A Healthcare Passport may improve communication with range of health and social support services, enhancing quality and continuity of care, and to permit a consideration of the challenges and how these might be managed effectively and compassionately. This study aims to evaluate the acceptability and use of this type of intervention for people living with dementia and their carers.\ud \ud \ud Methods/Design\ud \ud This is a qualitative longitudinal study informed by a critical realist review. The participants will be individuals identified as having mild-moderate dementia and informal carers. The in-depth interviews will occur at three points over the course of 18 months as they use the passport. This will be supplemented by analysis of the content of the passports and information from health and social care providers on the daily practicalities of using the passport in a range of healthcare settings.\ud \ud \ud Discussion\ud \ud By using a critical realist review and a qualitative, longitudinal approach, the study allows for the assessment of a complex intervention in a manner which goes beyond evaluating the basic efficacy of the passport, but looking more deeply at how it worked, for whom, and in what context. It has the potential to develop new data on how interventions improve communication across a range of service providers, while encouraging health and social care professionals to respect and encourage the development of self-management and retention of personhood throughout the progression of life-limiting illnesses

    The influence of institutional discourses on the work of informal carers: an institutional ethnography from the perspective of informal carers

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    Abstract Background The growing numbers of seniors worldwide and the need for support and services that follow from a higher standard of living have led to an increased focus on scarce benefits and limited human resources. At the same time, many western countries have had to make welfare cuts to balance budgets. This has brought the contributions of informal carers to the fore. Thus far, the focus has generally been on the need for the informal carers to receive information and support; to enable them to contribute. Methods The study is designed as an institutional ethnography. The article describes the social processes of informal caregiving and how it interacts with formal caregiving, from the perspective of informal carers. The research question for the study is How do institutional discourses on the work of informal carers influence informal carework? Data for the article comes from qualitative semi-structured interviews with 26 informal carers caring for persons with dementia in Norway, and with 7 administrators working in the allocation divisions of five different municipalities. Results The results demonstrate how three institutional discourses of informal carers’ work influence the allocation divisions’ practices and the work of informal carers in caring for their next of kin. The three discourses are categorised as moral and family obligation, shared care and task specificity. The informal carers want to contribute, as they feel a family and moral obligation to their next of kin. In the interaction with the allocation division, they find that the expectation that they will share in the carework and perform specific tasks forces them to perform care within a framework set by the public services. Conclusions The findings suggest that further research should challenge how services are distributed and allocated rather than focus on how to enable informal carers to fulfil their role better. Because of their moral and family obligation, the informal carers do not have to be forced to perform certain tasks or parts of the shared care. To maintain the informal carers’ carework and to fully utilise their contributions, public services would benefit from collaborating with the informal carers to fulfil the total care need of the person with dementia

    Perbandingan Kemampuan Kriteria WHO 1997 dan Klasifikasi DENCO dalam Diagnosis dan Klasifikasi Infeksi Dengue

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    Latar belakang. Sejalan dengan kemajuan ilmu pengetahuan, spektrum klinis infeksi dengue semakin luas dan bervariasi yang diikuti oleh beberapa klasifikasi infeksi dengue baru. Sejauh mana Kriteria WHO-1997 dan klasifikasi baru ini mampu mendeteksi infeksi dengue pasien di RS Sumber Waras, belum pernah dinilai. Tujuan. Membandingkan kesesuaian antara hasil konfirmasi laboratorium untuk infeksi dengue dengan kriteria WHO-1997, Klasifikasi DENCO, dan modifikasi WHO-1997 di RS Sumber Waras. Selain itu dinilai kemampuan ketiga kriteria/klasifikasi dalam mengelompokkan spektrum klinis infeksi dengue. Metode. Merupakan penelitian diskriptif retrospektif dengan menggunakan data penelitian kami terdahulu (cluster study untuk dengue). Hasil. Dalam periode tahun 2004-2008, terdapat 107 subjek penelitian terdiri 98 kasus infeksi virus dengue (serologi dan/atau virology positif) dan 9 sakit namun bukan kasus infeksi virus. Data menunjukkan bahwa dari 98 kasus terbukti infeksi dengue, 96 sesuai dengan Kriteria WHO 1997, 97 sesuai Klasifikasi Denco, dan 97 sesuai Modifikasi WHO-1997 di RS Sumber Waras. Terdapat 24 subjek yang tidak dapat diklasifikasikan dengan kriteria WHO 1997 yang ternyata 19 subjek dengue dengan tanda peringatan dan 5 subjek dengue berat berdasarkan Klasifikasi DENCO, sedangkan dengan modifikasi WHO-1997 RSSW (perdarahan bukan syarat mutlak), didapat 19 subjek DBD, SSD 2 subjek, DBD ensefalopati 1 subjek, dan SSD ensefalopati 2 subjek. Kesimpulan. Kriteria WHO-1997 masih merupakan kriteria yang sesuai dalam diagnosis infeksi dengue, namun untuk dapat mengelompokan spektrum klinis infeksi dengue perlu dipertimbangkan agar manifestasi perdarahan tidak digunakan sebagai syarat mutlak
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