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INTRODUCTION: Obstructive sleep apnoea (OSA) is a common, but underdiagnosed, sleep disorder. If untreated, it leads to poor health outcomes, including Alzheimer's disease, cancer, cardiovascular disease and all-cause mortality. Our aim is to determine the feasibility and cost-effectiveness of moving the testing for OSA into general practice and how general practitioner (GP)-based screening affects overall detection rates. METHODS AND ANALYSIS: Randomised controlled trial of case finding of OSA in general practice using a novel Medicines and Healthcare products Regulatory Agency-registered device (AcuPebble SA100) compared with usual care with internal feasibility phase. A diverse sample of general practices (approximately 40) from across the West Midlands Clinical Research Network will identify participants from their records. Eligible participants will be aged 50-70 years with body mass index >30 kg/m2 and diabetes (type 1 or 2) and/or hypertension (office blood pressure >145/90 mm Hg or on treatment). They will exclude individuals with known OSA or chronic obstructive pulmonary disease, or those they deem unable to take part. After eligibility screening, consent and baseline assessment, participants will be randomised to either the intervention or control group. Participants in the intervention arm will receive by post the AcuPebble sleep test kit. Those in the control arm will continue with usual care. Follow-up questionnaires will be completed at 6 months. The study is powered (90%) to detect a 5% difference and will require 606 patients in each arm (713 will be recruited to each arm to allow for attrition). Due to the nature of the intervention, participants and GPs will not be blinded to the allocation. OUTCOMES: Primary: Detection rate of moderate-to-severe OSA in the intervention group versus control group. Secondary: Time to diagnosis and time to treatment for intervention versus control group for mild, moderate and severe OSA; cost-effectiveness analysis comparing the different testing pathways. ETHICS AND DISSEMINATION: The trial started on 1 November 2022. Ethical approval was granted from the South Central Oxford A Research Ethics Committee on 9 June 2023 (23/SC/0188) (protocol amendment version 1.3; update with amendment and approval to renumber to V2.0 on 29 August 2023). Patient recruitment began on 7 January 2024; initial planned end date will be on 31 April 2025.Results will be uploaded to the ISRCTN register within 12 months of the end of the trial date, presented at conferences, submitted to peer-reviewed journals and distributed via our patient and public involvement networks.The University of Warwick will act as the trial sponsor. The trial will be conducted in accordance with the Sponsor and Primary Care Clinical Trials Unit standard operating procedures. TRIAL REGISTRATION NUMBER: ISRCTN 16982033.
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Análise Custo-Benefício , Atenção Primária à Saúde , Apneia Obstrutiva do Sono , Humanos , Apneia Obstrutiva do Sono/terapia , Apneia Obstrutiva do Sono/diagnóstico , Pessoa de Meia-Idade , Idoso , Ensaios Clínicos Controlados Aleatórios como Assunto , Feminino , Masculino , Programas de Rastreamento/métodos , Estudos de ViabilidadeRESUMO
BACKGROUND: Online appointment booking is a commonly used tool in several industries. There is limited evidence about the benefits and challenges of using online appointment booking in health care settings. Potential benefits include convenience and the ability to track appointments, although some groups of patients may find it harder to engage with online appointment booking. We sought to understand how patients in England used and experienced online appointment booking. OBJECTIVE: This study aims to describe and compare the characteristics of patients in relation to their use of online appointment booking in general practice and investigate patients' views regarding online appointment booking arrangements. METHODS: This was a mixed methods study set in English general practice comprising a retrospective analysis of the General Practice Patient Survey (GPPS) and semistructured interviews with patients. Data used in the retrospective analysis comprised responses to the 2018 and 2019 GPPS analyzed using mixed-effects logistic regression. Semistructured interviews with purposively sampled patients from 11 general practices in England explored experiences of and views on online appointment booking. Framework analysis was used to allow for comparison with the findings of the retrospective analysis. RESULTS: The retrospective analysis included 1,327,693 GPPS responders (2018-2019 combined). We conducted 43 interviews with patients with a variety of experiences and awareness of online appointment booking; of these 43 patients, 6 (14%) were from ethnic minority groups. In the retrospective analysis, more patients were aware that online appointment booking was available (581,224/1,288,341, 45.11%) than had experience using it (203,184/1,301,694, 15.61%). There were deprivation gradients for awareness and use and a substantial decline in both awareness and use in patients aged >75 years. For interview participants, age and life stage were factors influencing experiences and perceptions, working patients valued convenience, and older patients preferred to use the telephone. Patients with long-term conditions were more aware of (odds ratio [OR] 1.43, 95% CI 1.41-1.44) and more likely to use (OR 1.65, 95% CI 1.63-1.67) online appointment booking. Interview participants with long-term conditions described online appointment booking as useful for routine nonurgent appointments. Patients in deprived areas were clustered in practices with low awareness and use of online appointment booking among GPPS respondents (OR for use 0.65, 95% CI 0.64-0.67). Other key findings included the influence of the availability of appointments online and differences in the registration process for accessing online booking. CONCLUSIONS: Whether and how patients engage with online appointment booking is influenced by the practice with which they are registered, whether they live with long-term conditions, and their deprivation status. These factors should be considered in designing and implementing online appointment booking and have implications for patient engagement with the wider range of online services offered in general practice.
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Agendamento de Consultas , Atenção Primária à Saúde , Humanos , Atenção Primária à Saúde/estatística & dados numéricos , Masculino , Feminino , Estudos Retrospectivos , Pessoa de Meia-Idade , Adulto , Inglaterra , Idoso , Adulto Jovem , Adolescente , Internet , Inquéritos e Questionários , Satisfação do Paciente/estatística & dados numéricosRESUMO
BACKGROUND: Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. METHODS: This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care. DISCUSSION: Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma. TRIAL REGISTRATION: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.
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Cuidadores , Comunicação , Cuidados Paliativos , Alta do Paciente , Pesquisa Qualitativa , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Alta do Paciente/normas , Cuidadores/psicologia , Pessoal de Saúde/psicologia , Atenção Primária à Saúde/normas , Masculino , Feminino , Adulto , Entrevistas como Assunto/métodos , Pacientes/psicologia , Continuidade da Assistência ao Paciente/normasRESUMO
Background: The need for palliative care is rising globally with 76% of those who are in need living in low- and middle-income countries (LMICs). Digital health interventions (DHIs) have been identified as a means of making palliative care more widely accessible. This review summarizes the range and characteristics of DHIs used to deliver palliative care in LMICs and sought to identify factors that influence their implementation and utilization. Objectives: This review aims to summarize the range and characteristics of DHIs used to deliver palliative care in LMICs and identify factors that influence their implementation and utilization. Design: Mixed-method systematic review incorporating both quantitative and qualitative data. Data sources and methods: All studies focusing on DHIs for patients who need palliative care (adults/children) and their caregivers (patient and caregiver centred) in LMICs and published in English were identified through a systematic search of MEDLINE, EMBASE, PsycINFO and CINAHL databases. Data synthesis and analysis were carried out following the convergent integrated approach based on the Joanna Briggs Institute (JBI) methodology for mixed-methods systematic reviews. Results: Fifteen studies were included (three qualitative, four mixed-methods and eight quantitative studies). Telemedicine/mHealth was the most reported DHI utilized in LMICs in delivering palliative care. Patients and caregivers benefited from using DHIs in many ways including increased access to care with reduced discomfort, travel time and risk of health care-associated infections. Health care providers also reported that using DHI such as telemedicine enables them to provide care in a more effective and efficient way. Four factors were identified as the main barriers to implementation: resource constraints; literacy, training and skills; governance, operational and communication issues and technical issues. Conclusion: DHIs, such as telemedicine, have the potential to enhance accessibility to palliative care in LMICs, particularly in rural areas. Comprehensive strategies for their use are required to address the identified barriers.
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BACKGROUND: Discharge from hospital is a critical part of the patient journey, particularly for older patients with multi-morbidity and polypharmacy. General practice has a key role in managing the post-discharge course of patients. A communication intervention for use in General Practice in the immediate post-discharge period has great potential to improve shared decision making, enhancing patient experiences of post-discharge care. AIM: General Practice Management After Transition Events (GP-MATE) aims to produce a tool for older patients and their carers (GP-MATE) which will assist better communication with their general practice about their care after discharge, thereby improving patient safety outcomes. DESIGN & SETTING: Experience-Based Co-Design (EBCD) study involving general practices across the West Midlands. METHOD: A slightly modified approach to EBCD will be followed to create GP-MATE. A focused ethnography undertaken at general practices will provide an understanding of practices' systems for post-discharge management of older patients. Semi-structured video interviews with recently discharged older patients or their carers will be edited into a trigger film. Finally, co-design workshops with older people, carers and healthcare staff working in general practices will take place with participants from three regions across England. CONCLUSION: EBCD will be used to take a patient centric approach towards creating GP-MATE; patients' and carers' priorities will be directly reflected within the tool. GP-MATE will be a low-cost intervention which improves health literacy, empowering patients to fill the emerging gap in continuity in the post-discharge period and enhancing patient experiences of post discharge care.
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BACKGROUND: Addressing increasing patient demand and improving ED patient flow is a key ambition for NHS England. Delivering general practitioner (GP) services in or alongside EDs (GP-ED) was advocated in 2017 for this reason, supported by £100 million (US$130 million) of capital funding. Current evidence shows no overall improvement in addressing demand and reducing waiting times, but considerable variation in how different service models operate, subject to local context. METHODS: We conducted mixed-methods analysis using inductive and deductive approaches for qualitative (observations, interviews) and quantitative data (time series analyses of attendances, reattendances, hospital admissions, length of stay) based on previous research using a purposive sample of 13 GP-ED service models (3 inside-integrated, 4 inside-parallel service, 3 outside-onsite and 3 with no GPs) in England and Wales. We used realist methodology to understand the relationship between contexts, mechanisms and outcomes to develop programme theories about how and why different GP-ED service models work. RESULTS: GP-ED service models are complex, with variation in scope and scale of the service, influenced by individual, departmental and external factors. Quantitative data were of variable quality: overall, no reduction in attendances and waiting times, a mixed picture for hospital admissions and length of hospital stay. Our programme theories describe how the GP-ED service models operate: inside the ED, integrated with patient flow and general ED demand, with a wider GP role than usual primary care; outside the ED, addressing primary care demand with an experienced streaming nurse facilitating the 'right patients' are streamed to the GP; or within the ED as a parallel service with most variability in the level of integration and GP role. CONCLUSION: GP-ED services are complex . Our programme theories inform recommendations on how services could be modified in particular contexts to address local demand, or whether alternative healthcare services should be considered.
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Serviço Hospitalar de Emergência , Medicina Estatal , Humanos , Serviço Hospitalar de Emergência/organização & administração , Serviço Hospitalar de Emergência/estatística & dados numéricos , Inglaterra , Medicina Estatal/organização & administração , País de Gales , Clínicos Gerais , Tempo de Internação/estatística & dados numéricosRESUMO
Background: Emergency healthcare services are under intense pressure to meet increasing patient demands. Many patients presenting to emergency departments could be managed by general practitioners in general practitioner-emergency department service models. Objectives: To evaluate the effectiveness, safety, patient experience and system implications of the different general practitioner-emergency department models. Design: Mixed-methods realist evaluation. Methods: Phase 1 (2017-8), to understand current practice: rapid realist literature review, national survey and follow-up key informant interviews, national stakeholder event and safety data analysis. Phase 2 (2018-21), to collect and analyse qualitative (observations, interviews) and quantitative data (time series analysis); cost-consequences analysis of routine data; and case site data for 'marker condition' analysis from a purposive sample of 13 case sites in England and Wales. Phase 3 (2021-2), to conduct mixed-methods analysis for programme theory and toolkit development. Results: General practitioners commonly work in emergency departments, but delivery models vary widely in terms of the scope of the general practitioner role and the scale of the general practitioner service. We developed a taxonomy to describe general practitioner-emergency department service models (Integrated with the emergency department service, Parallel within the emergency department, Outside the emergency department on the hospital site) and present a programme theory as principal output of the study to describe how these service models were observed to operate. Routine data were of variable quality, limiting our analysis. Time series analysis demonstrated trends across intervention sites for: increased time spent in the emergency department; increased emergency department attendances and reattendances; and mixed results for hospital admissions. Evidence on patient experience was limited but broadly supportive; we identified department-level processes to optimise the safety of general practitioner-emergency department models. Limitations: The quality, heterogeneity and extent of routine emergency department data collection during the study period limited the conclusions. Recruitment was limited by criteria for case sites (time series requirements) and individual patients (with 'marker conditions'). Pandemic and other pressures limited data collection for marker condition analysis. Data collected and analysed were pre pandemic; new approaches such as 'telephone first' and their relevance to our findings remains unexplored. Conclusion: Findings suggest that general practitioner-emergency department service models do not meet the aim of reducing the overall emergency department waiting times and improving patient flow with limited evidence of cost savings. Qualitative data indicated that general practitioners were often valued as members of the wider emergency department team. We have developed a toolkit, based on our findings, to provide guidance for implementing and delivering general practitioner-emergency department services. Future work: The emergency care data set has since been introduced across England to help standardise data collection to facilitate further research. We would advocate the systematic capture of patient experience measures and patient-reported outcome measures as part of routine care. More could be done to support the development of the general practitioner in emergency department role, including a core set of competencies and governance structure, to reflect the different general practitioner-emergency department models and to evaluate the effectiveness and cost effectiveness to guide future policy. Study registration: This study is registered as PROSPERO CRD42017069741. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 15/145/04) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 10. See the NIHR Funding and Awards website for further award information.
Hospital emergency departments are under huge pressure. Patients are waiting many hours to be seen, some with problems that general practitioners could deal with. To reduce waiting times and improve patient care, arrangements have been put in place for general practitioners to work in or alongside emergency departments (general practitioneremergency department models). We studied the different ways of working to find out what works well, how and for whom. We brought together a lot of information. We reviewed existing evidence, sent out surveys to 184 emergency departments, spent time in the emergency departments observing how they operated and interviewing 106 staff in 13 hospitals and 24 patients who visited those emergency departments. We also looked at statistical information recorded by hospitals. Two public contributors were involved from the beginning, and we held two stakeholder events to ensure the relevance of our research to professionals and patients. Getting reliable figures to compare the various general practitioneremergency department set-ups (inside, parallel to or outside the emergency department) was difficult. Our findings suggest that over time more people are coming to emergency departments and overall waiting times did not generally improve due to general practitioneremergency department models. Evidence that general practitioners might admit fewer patients to hospital was mixed, with limited findings of cost savings. Patients were generally supportive of the care they received, although we could not speak to as many patients as we planned. The skills and experience of general practitioners were often valued as members of the wider emergency department team. We identified how the care provided was kept safe with: strong leaders, good communication between different types of staff, highly trained and experienced nurses responsible for streaming and specific training for general practitioners on how they were expected to work. We have produced a guide to help professionals develop and improve general practitioneremergency department services and we have written easy-to-read summaries of all the articles we published.
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Serviço Hospitalar de Emergência , Clínicos Gerais , Humanos , Serviço Hospitalar de Emergência/organização & administração , Inglaterra , Modelos Organizacionais , Satisfação do Paciente , Inquéritos e Questionários , País de GalesRESUMO
INTRODUCTION: People from Black African Diaspora Communities (BAFDC) experience poorer health outcomes, have many long-term conditions and are persistently under-represented in health and care research. There is limited focus on programmes, or interventions that support inclusion and participation of people from BAFDC in research. Through coproduction, this realist review seeks to provide a programme theory explaining what context and mechanisms may be required, to produce outcomes that facilitate inclusion and participation for people from BAFDC in health and care research, in the UK. METHODS AND ANALYSIS: A group of people from BAFDC with lived and professional experience, representing all levels of the health and care research system, will coproduce a realist review with a team of African-Caribbean, white British and white British of Polish origin health and care researchers. They will follow Pawson's five steps: (1) shaping the scope of the review; (2) searching for evidence; (3) document selection and appraisal; (4) data extraction and (5) data synthesis. The coproduction group will help to map the current landscape, identifying key issues that may inhibit or facilitate inclusion. Data will be extracted, analysed and synthesised following realist logic analysis, identifying and explaining how context and mechanisms are conceptualised in the literature and the types of contextual factors that exist and impact on inclusion and participation. Findings will be reported in accordance with Realist and Meta-narrative Evidence Synthesis Evolving Standards . ETHICS AND DISSEMINATION: The coproduction group will agree an ethical approach considering accountability, responsibility and power dynamics, by establishing a terms of reference, taking a reflexive approach and coproducing an ethical framework. Findings will be disseminated to BAFDC and the research community through arts-based methods, peer-reviewed publications and conference presentations, agreeing a coproduced strategy for dissemination. Ethical review is not required. PROSPERO REGISTRATION NUMBER: CRD42024517124.
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Narração , Projetos de Pesquisa , Humanos , Reino Unido , Literatura de Revisão como AssuntoRESUMO
BACKGROUND: Patient and Public Involvement and Engagement (PPIE) should be embedded as part of researchers' everyday practice. However, this can be challenging. Creating a digital presence for PPIE as part of Higher Education Institutes' (HEIs) infrastructure may be one way of supporting this. This can support how information is made available to patients and members of the public, but relatively little is known about how HEIs can best do this. Our aim was to develop a university website for patients and members of the public to learn about ways to get actively involved in research and be able to access the results of health and social care research. METHODS: This project involved working as partners with five National Institute for Health and Care Research (NIHR) Research Champions. NIHR Research Champions are volunteers who raise awareness and share experiences about health and social care research. Content of a prototype Patient Public Community Research Hub website was co-produced with the Research Champions, and then 15 NIHR Research Champions from across England were asked for their views about the website. FINDINGS: The information collected told us that the Patient Public Community Research Hub was viewed as being beneficial for increasing visibility of PPIE opportunities and sharing the findings of studies though needs further work: to make the information more user-friendly; to improve the methods for directing people to the site and to create new ways of connecting with people. It provides a foundation for further co-development and evaluation. A set of recommendations has been developed that may be of benefit to other HEIs and organisations who are committed to working with patients and members of the public.
Sharing the results of health and care research studies with patients and members of the public could be improved. In many cases, patients and members of the public do not receive the results of studies they have taken part in. As well, it should also be easy for patients and members of the public to find out about opportunities to get involved with researchers in the development of their research. Universities have an important role to play in providing opportunities for patients and members of the public to be involved in the development of research studies, as well as sharing the findings of their studies. Creating an online patient public community research hub for this purpose was co-produced with National Institute for Health and Care Research (NIHR) Research Champions. The aims of this research were to find out what research volunteers within the National Institute for Health Research (NIHR), in the UK, would like to find on a university website about health and care research. This research aimed to understand how best to raise awareness about how people can get involved in research. It also aimed to understand how best to share information about research, with patients and members of the public, from a university website. Five NIHR Research Champions from diverse ethnic and cultural backgrounds (including younger and older people) helped to develop a set of webpages on a university website, called the Patient Public Community Research Hub. Once the initial online hub was created, online interviews were held with another 15 NIHR Research Champions. The interviews were to help the researcher to understand what they thought about the Patient Public Community Research Hub. The results from the interviews were analysed and grouped into themes. The themes helped to tell us what NIHR Research Champions felt patients and members of the public would want to see on the Patient Public Community Research Hub and what areas needed improving. A co-produced set of recommendations was created with the NIHR Research Champions who helped to shape the Patient Public Community Research Hub. The recommendations are for researchers, other organisations, or services to use. These recommendations along with the findings may help to improve how information gets shared about the results of research and ways in which patients and members of the public can get involved.
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BACKGROUND: A holistic approach to emergency care treatment planning is needed to ensure that patients' preferences are considered should their clinical condition deteriorate. To address this, emergency care and treatment plans (ECTPs) have been introduced. Little is known about their use in general practice. AIM: To find out GPs' experiences of, and views on, using ECTPs. DESIGN & SETTING: Online survey of GPs practising in England. METHOD: A total of 841 GPs were surveyed using the monthly online survey provided by medeConnect, a market research company. RESULTS: Forty-one per cent of responders' practices used Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) plans for ECTP, 8% used other ECTPs, and 51% used Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) forms. GPs were the predominant professional group completing ECTPs in the community. There was broad support for a wider range of community-based health and social care professionals being able to complete ECTPs. There was no system for reviewing ECTPs in 20% of responders' practices. When compared with using a DNACPR form, GPs using a ReSPECT form for ECTP were more comfortable having conversations about emergency care treatment with patients (odds ratio [OR] = 1.72, 95% confidence interval [CI] = 1.1 to 2.69) and family members (OR =1.85, 95% CI = 1.19 to 2.87). CONCLUSION: The potential benefits and challenges of widening the pool of health and social care professionals initiating and/or completing the ECTP process needs consideration. ReSPECT plans appear to make GPs more comfortable with ECTP discussions, supporting their implementation. Practice-based systems for reviewing ECTP decisions should be strengthened.
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Background: The Covid-19 pandemic resulted in the development of numerous recommendations for practice and policy for specialist palliative care provided by hospices in United Kingdom (UK), as hospices were significantly affected by the pandemic and protections put in place.The aim of this review is to identify and synthesise recommendations or implications for policy and practice that have been generated for adult hospice specialist palliative care during the first 24 months of the Covid-19 pandemic. Methods: AMED, BNI, CINAHL, EMBASE, EMCARE, HMIC, Medline, PsycINFO, PubMed databases were searched for peer-reviewed papers, as well as hand searchers for grey literature. Literature relating to hospices and Covid-19 in the UK were included and a thematic synthesis of recommendations for hospice policy and practice was undertaken. Results: 858 articles were identified with 12 meeting the inclusion criteria. Fifty-eight recommendations or implications were identified: 31 for policy, 27 for practice, and 10 covering both. Recommendations were organised under ten themes. There were several recommendations seeking to secure hospice resources to mitigate the short-term impact of the pandemic, as well as those focused on longer-term implications such as core funding. The impact of the pandemic on the quality of hospice care was the focus for numerous recommendations around improving integration of hospice care in the community, provision of bereavement support and better use of Advance Care Plans (ACP). However, there were significant gaps related to carer visitation in hospices, inequities of palliative care, or hospice-at-home services. Conclusion: The Covid-19 pandemic and protections exposed several ongoing policy and practice needs, especially around hospice resources, while generating novel issues for hospices to address. Significant policy gaps remain to be addressed to mitigate the impact of the pandemic on the quality of hospice specialist palliative care.
Hospices in the UK faced many challenges during the first two-years of the Covid-19 pandemic. In this time several research studies and reviews took place that provided hospices with recommendations for how to adapt their policies and clinical practices. In this review we identified 12 documents that contained 58 recommendations for hospices' policy and practice. We grouped these recommendations together under ten key themes. We found that there were several recommendations aiming to secure hospice resources to mitigate the short and longer-term impacts upon hospice funding. The impact of the pandemic on the quality of hospice care was the focus for numerous recommendations around improving integration of hospice care in the community, provision of bereavement support and better use of Advance Care Plans (ACP). However, there were significant gaps related to carer visitation in hospices, inequities of palliative care, or hospice-at-home services.
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Background: Prior to undertaking a study looking at the effects of the COVID-19 pandemic upon lived experiences of hospice services in the West Midlands, we sought to identify the range of issues that hospice service users and providers faced between March 2020 and July 2021, and to provide a report that can be accessed and understood by all interested stakeholders. Methods: We undertook a collaborative multi-stakeholder approach for scoping the range of potential issues and synthesising knowledge. This involved a review of available literature; a focus group with hospice stakeholders; and a collaborative knowledge exchange panel. Results: The literature on the effects of the COVID-19 pandemic on hospices remains limited, but it is developing a picture of a service that has had to rapidly adapt the way it provides care and support to its service users, during a period when it faced many fundamental challenges to established ways of providing these services. Results: The impacts of many of the changes on hospices have not been fully assessed. It is also not known what the effects upon the quality of care and support are for those with life-limiting conditions and those that care for them. We found that the pandemic has presented a new normative and service context in which quality of care and life itself was valued that is, as yet, poorly understood.