RESUMO
BACKGROUND: The disproportionate effect of COVID-19 on long term care facility (LTCF) residents has highlighted the need for clear, consistent guidance on the management of pandemics in such settings. As research exploring the experiences of LTCFs during the pandemic and the implications of mass hospital discharge, restricting staff movement, and limiting visitation from relatives are emerging, an in-depth review of policies, guidance and recommendations issued during this time could facilitate wider understanding in this area. AIMS: To identify policies, guidance, and recommendations related to LTCF staff and residents, in England issued by the government during the COVID-19 pandemic, developing a timeline of key events and synthesizing the policy aims, recommendations, implementation and intended outcomes. METHOD: A scoping review of publicly available policy documents, guidance, and recommendations related to COVID-19 in LTCFs in England, identified using systematic searches of UK government websites. The main aims, recommendations, implementation and intended outcomes reported in included documents were extracted. Data was analysed using thematic synthesis following a three-stage approach: coding the text, grouping codes into descriptive themes, and development of analytical themes. RESULTS: Thirty-three key policy documents were included in the review. Six areas of recommendations were identified: infection prevention and control, hospital discharge, testing and vaccination, staffing, visitation and continuing routine care. Seven areas of implementation were identified: funding, collaborative working, monitoring and data collection, reducing workload, decision making and leadership, training and technology, and communication. DISCUSSION: LTCFs remain complex settings, and it is imperative that lessons are learned from the experiences during COVID-19 to ensure that future pandemics are managed appropriately. This review has synthesized the policies issued during this time, however, the extent to which such guidance was communicated to LTCFs, and subsequently implemented, in addition to being effective, requires further research. In particular, understanding the secondary effects of such policies and how they can be introduced within the existing challenges inherent to adult social care, need addressing.
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COVID-19 , Assistência de Longa Duração , Pandemias , COVID-19/epidemiologia , COVID-19/prevenção & controle , Humanos , Inglaterra/epidemiologia , Assistência de Longa Duração/métodos , Política de Saúde , Guias de Prática Clínica como Assunto/normas , Casas de Saúde/normas , Idoso , SARS-CoV-2RESUMO
BACKGROUND: A substantial number of Emergency Department (ED) attendances by care home residents are potentially avoidable. Health Call Digital Care Homes is an app-based technology that aims to streamline residents' care by recording their observations such as vital parameters electronically. Observations are triaged by remote clinical staff. This study assessed the effectiveness of the Health Call technology to reduce unplanned secondary care usage and associated costs. METHODS: A retrospective analysis of health outcomes and economic impact based on an intervention. The study involved 118 care homes across the North East of UK from 2018 to 2021. Routinely collected NHS secondary care data from County Durham and Darlington NHS Foundation Trust was linked with data from the Health Call app. Three outcomes were modelled monthly using Generalised Linear Mixed Models: counts of emergency attendances, emergency admissions and length of stay of emergency admissions. A similar approach was taken for costs. The impact of Health Call was tested on each outcome using the models. FINDINGS: Data from 8,702 residents were used in the analysis. Results show Health Call reduces the number of emergency attendances by 11% [6-15%], emergency admissions by 25% [20-39%] and length of stay by 11% [3-18%] (with an additional month-by-month decrease of 28% [24-34%]). The cost analysis found a cost reduction of £57 per resident in 2018, increasing to £113 in 2021. INTERPRETATION: The introduction of a digital technology, such as Health Call, could significantly reduce contacts with and costs resulting from unplanned secondary care usage by care home residents.
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Tecnologia Digital , Atenção Secundária à Saúde , Humanos , Estudos Retrospectivos , Hospitalização , TriagemRESUMO
BACKGROUND: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. AIM: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. DESIGN: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. SETTING/PARTICIPANTS: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. RESULTS: Patients with a good performance status were underrepresented in the intervention group (p< 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p< 0.001). Total average costs of hospital care during 12 months follow-up were 32,700 for intervention versus 40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). CONCLUSIONS: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established.
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Planejamento Antecipado de Cuidados , Neoplasias , Humanos , Neoplasias/terapia , Europa (Continente) , Custos de Cuidados de Saúde , Atenção à SaúdeRESUMO
BACKGROUND: There is uncertainty about the factors influencing inequities in access to palliative care in socially deprived areas, including the role of service models and professional perceptions. AIM: To explore the relationship between social deprivation and access to hospice care, including factors influencing access and professional experiences of providing care. DESIGN: A mixed-methods multiple case study approach was used. Hospice referrals data were analysed using generalised linear mixed models and other regression analyses. Qualitative interviews with healthcare professionals were analysed using thematic analysis. Findings from different areas (cases) were compared in a cross-case analysis. SETTING: The study took place in North West England, using data from three hospices (8699 hospice patients) and interviews with 42 healthcare professionals. RESULTS: Social deprivation was not statistically significantly, or consistently, associated with hospice referrals in the three cases (Case 1, Incidence Rate Ratio 1.04, p = 0.75; Case 2, Incidence Rate Ratio 1.09, p = 0.15, Case 3, Incidence Rate Ratio 0.88, p = 0.35). Hospice data and interviews suggest the model of hospice care, including working relationship with hospitals, and the local nature of social deprivation influenced access. Circumstances associated with social deprivation can conflict with professional expectations within palliative care. CONCLUSION: Hospice care in the UK can be organised in ways that facilitate referrals of patients from socially deprived areas, although uncertainty about what constitutes need limits conclusions about equity. Grounding professional narratives around expectations, responsibility, and choice in frameworks that recognise the sociostructural influences on end-of-life circumstances may help to foster more equitable palliative care.
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Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidados Paliativos/métodos , Inglaterra/epidemiologiaRESUMO
BACKGROUND: Although a significant proportion of children with cancer need palliative care, few are referred or referred late, with oncologists and haematologists gatekeeping the referral process. We aimed to explore the facilitators and barriers to palliative care referral. METHODS: Twenty-two paediatric oncologists and haematologists were purposively recruited and interviewed. Data were analysed using reflexive thematic analysis. Findings were interpreted using the critical realist paradigm. RESULTS: Four themes were generated. 1) Oncologists expressed concern about the competency of palliative care teams. Palliative care often symbolised therapeutic failure and abandonment, which hindered referral. Trustworthy palliative care providers had clinical competence, benevolence, and knowledge of oncology and paediatrics. 2) Making a palliative care referral was associated with stigma, navigating illness-related factors, negative family attitudes and limited resources, impeding palliative care referral. 3) There were benefits to palliative care referral, including symptom management and psychosocial support for patients. However, some could see interactions with the palliative care team as interference hindering future referrals. 4) Suggested strategies for developing an integrated palliative care model include evident collaboration between oncology and palliative care, early referral, rebranding palliative care as symptom control and an accessible, knowledgeable, and proactive palliative care team. CONCLUSION: Presuppositions about palliative care, the task of making a referral, and its cost-benefits influenced referral behaviour. Early association with an efficient rebranded palliative care team might enhance integration.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Pediatria , Humanos , Criança , Cuidados Paliativos , Oncologia , Encaminhamento e ConsultaRESUMO
BACKGROUND: Efforts inequities in access to palliative and end-of-life care require comprehensive understanding about the extent of and reasons for inequities. Most research on this topic examines differences in receipt of care. There is a need, particularly in the UK, for theoretically driven research that considers both receipt of care and the wider factors influencing the relationship between socioeconomic position and access to palliative and end-of-life care. METHODS: This is a mixed studies narrative synthesis on socioeconomic position and access to palliative and end-of-life care in the UK. Study searches were conducted in databases AMED, Medline, Embase, CINAHL, SocIndex, and Academic Literature Search, as well as grey literature sources, in July 2020. The candidacy model of access, which describes access as a seven-stage negotiation between patients and providers, guided study searches and provided a theoretical lens through which data were synthesised. RESULTS: Searches retrieved 5303 studies (after de-duplication), 29 of which were included. The synthesis generated four overarching themes, within which concepts of candidacy were evident: identifying needs; taking action; local conditions; and receiving care. CONCLUSION: There is not a consistent or clear narrative regarding the relationship between socioeconomic position and receipt of palliative and end-of-life care in the UK. Attempts to address any inequities in access will require knowledge and action across many different areas. Key evidence gaps in the UK literature concern the relationship between socioeconomic position, organisational context, and assessing need for care.
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Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Cuidados Paliativos , Fatores Socioeconômicos , Reino UnidoRESUMO
BACKGROUND: Patients with palliative needs experience high psychological and symptom distress that may lead to hopelessness and impaired sense of dignity. Maintaining patient dignity or the quality of being valued is a core aim in palliative care. The notion of dignity is often explained by functionality, symptom relief and autonomy in decision making. However, this understanding and its implications in Middle Eastern countries is not clear. The aim of this review is to 1) explore the understanding of dignity and how dignity is preserved in adult patients with palliative care needs in the Middle East 2) critically assess the findings against the Dignity Model dominant in western literature. METHOD: Using an integrative review we searched four databases EMBASE, Psych-Info, CINAHL, and PubMed. These databases retrieve a broad literature on palliative care and are often chosen in other palliative care reviews. To enhance the search strategy, three online journals were hand searched, reference lists of review papers scanned, and forward citations sought. No time limits were applied. The retrieved papers were assessed independently by two authors including quality assessment using the Hawker's appraisal tool. RESULTS: Out of the 5113 studies retrieved, 294 full texts were assessed. Sixteen studies were included for synthesis of which fourteen were published in Iran. Seven themes were developed after data analysis: Maintaining Privacy and Secrecy; Gentle communication with a dialogue that preserves hope instead of blunt truth-telling; Abundance characterised by accessibility to medical supplies and financial stability; Family Support where relatives deliver major assistance in care; Physical Fitness; Reliable health care, and Social justice that endorses equal care to all. CONCLUSION: The results are compatible with the existing evidence from the Dignity Model ascertaining that dignity is socially mediated and influenced by interactions and physical fitness. Nevertheless, the findings highlight that patient dignity is also shaped by the socio-political, cultural, and economic conditions of the country, where family support, gentle communication and accessible health care are essential elements.
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Cuidados Paliativos , Respeito , Adulto , Comunicação , Atenção à Saúde , Humanos , Inquéritos e QuestionáriosRESUMO
Patients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.
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Insuficiência Cardíaca , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/terapia , Humanos , Avaliação das Necessidades , Cuidados Paliativos , PsicometriaRESUMO
BACKGROUND: People with advanced dementia who live and die in nursing homes experience variable quality of life, care and dying. There is a need to identify appropriate, cost-effective interventions that facilitate high-quality end-of-life care provision. OBJECTIVES: To establish the feasibility and acceptability to staff and family of conducting a cluster randomised controlled trial of the Namaste Care intervention for people with advanced dementia in nursing homes. DESIGN: The study had three phases: (1) realist review and (2) intervention refinement to inform the design of (3) a feasibility cluster randomised controlled trial with a process evaluation and economic analysis. Clusters (nursing homes) were randomised in a 3 : 1 ratio to intervention or control (usual care). The nature of the intervention meant that blinding was not possible. SETTING: Nursing homes in England providing care for people with dementia. PARTICIPANTS: Residents with advanced dementia (assessed as having a Functional Assessment Staging Test score of 6 or 7), their informal carers and nursing home staff. INTERVENTION: Namaste Care is a complex group intervention that provides structured personalised care in a dedicated space, focusing on enhancements to the physical environment, comfort management and sensory engagement. MAIN OUTCOME MEASURES: The two contender primary outcome measures were Comfort Assessment in Dying - End of Life Care in Dementia for quality of dying (dementia) and Quality of Life in Late Stage Dementia for quality of life. The secondary outcomes were as follows: person with dementia, sleep/activity (actigraphy), neuropsychiatric symptoms, agitation and pain; informal carers, satisfaction with care at the end of life; staff members, person-centred care assessment, satisfaction with care at the end of life and readiness for change; and other data - health economic outcomes, medication/service use and intervention activity. RESULTS: Phase 1 (realist review; 86 papers) identified that a key intervention component was the activities enabling the development of moments of connection. In phase 2, refinement of the intervention enabled the production of a user-friendly 16-page A4 booklet. In phase 3, eight nursing homes were recruited. Two homes withdrew before the intervention commenced; four intervention and two control homes completed the study. Residents with advanced dementia (n = 32) were recruited in intervention (n = 18) and control (n = 14) homes. Informal carers (total, n = 12: intervention, n = 5; control, n = 7) and 97 staff from eight sites (intervention, n = 75; control, n = 22) were recruited over a 6-month period. Recruitment is feasible. Completion rates of the primary outcome questionnaires were high at baseline (100%) and at 4 weeks (96.8%). The Quality of Life in Late Stage Dementia was more responsive to change over 24 weeks. Even where economic data were missing, these could be collected in a full trial. The intervention was acceptable; the dose varied depending on the staffing and physical environment of each care home. Staff and informal carers reported changes for the person with dementia in two ways: increased social engagement and greater calm. No adverse events related to the intervention were reported. CONCLUSIONS: A subsequent definitive trial is feasible if there are amendments to the recruitment process, outcome measure choice and intervention specification. FUTURE WORK: In a full trial, consideration is needed of the appropriate outcome measure that is sensitive to different participant responses, and of clear implementation principles for this person-centred intervention in a nursing home context. TRIAL REGISTRATION: Current Controlled Trials ISRCTN14948133. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 6. See the NIHR Journals Library website for further project information.
Namaste Care is a programme of respectful stimulation for nursing home residents who have advanced dementia. It is person-focused and reflects residents' individual likes and interests. It is claimed that Namaste Care improves quality of life for residents, family and staff, and quality of dying for residents, and can be provided without additional cost. This study explored how feasible it would be to conduct a large study in the future to understand the effects of Namaste Care on people with advanced dementia. Our literature review showed that Namaste Care enables people with advanced dementia to have moments of connection with others. We refined some Namaste Care resources through working with care home staff, family and volunteers to create a user-friendly booklet. Eight care homes were recruited to our 6-month trial; four homes were supported to introduce Namaste Care, two continued as usual and two withdrew. In the four intervention homes, residents with advanced dementia received Namaste Care. Staff used standard measures to assess (1) residents' responses and (2) the economic costs and benefits of Namaste Care. Researchers made observation visits. Records of activity in Namaste Care sessions were completed, and interviews were held with staff and family. Residents wore an ActiGraph (Activinsights Ltd, Kimbolton, UK) device that recorded their levels of sleep and activity. The length and frequency of Namaste Care sessions varied. Nursing homes incurred additional costs but could see ways to reduce those. All residents accepted wearing an ActiGraph device. Staff completed the data collection tools; some measures were more informative than others. Data from interviews showed that most people had positive experiences of Namaste Care. The findings support the view that Namaste Care has benefits for people with advanced dementia in nursing homes. We consider that, with some changes, this trial offers a model for a large study to show whether or not Namaste Care could be promoted more widely.
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Demência , Casas de Saúde , Assistência Centrada no Paciente , Qualidade de Vida/psicologia , Assistência Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Análise Custo-Benefício , Demência/psicologia , Demência/terapia , Inglaterra , Estudos de Viabilidade , Feminino , Humanos , Masculino , Índice de Gravidade de Doença , Inquéritos e Questionários , Avaliação da Tecnologia BiomédicaRESUMO
BACKGROUND: Palliative care trials have higher rates of attrition. The MORECare guidance recommends applying classifications of attrition to report attrition to help interpret trial results. The guidance separates attrition into three categories: attrition due to death, illness or at random. The aim of our study is to apply the MORECare classifications on reported attrition rates in trials. METHODS: A systematic review was conducted and attrition classifications retrospectively applied. Four databases, EMBASE; Medline, CINHAL and PsychINFO, were searched for randomised controlled trials of palliative care populations from 01.01.2010 to 08.10.2016. This systematic review is part of a larger review looking at recruitment to randomised controlled trials in palliative care, from January 1990 to early October 2016. We ran random-effect models with and without moderators and descriptive statistics to calculate rates of missing data. RESULTS: One hundred nineteen trials showed a total attrition of 29% (95% CI 28 to 30%). We applied the MORECare classifications of attrition to the 91 papers that contained sufficient information. The main reason for attrition was attrition due to death with a weighted mean of 31.6% (SD 27.4) of attrition cases. Attrition due to illness was cited as the reason for 17.6% (SD 24.5) of participants. In 50.8% (SD 26.5) of cases, the attrition was at random. We did not observe significant differences in missing data between total attrition in non-cancer patients (26%; 95% CI 18-34%) and cancer patients (24%; 95% CI 20-29%). There was significantly more missing data in outpatients (29%; 95% CI 22-36%) than inpatients (16%; 95% CI 10-23%). We noted increased attrition in trials with longer durations. CONCLUSION: Reporting the cause of attrition is useful in helping to understand trial results. Prospective reporting using the MORECare classifications should improve our understanding of future trials.
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Guias como Assunto/normas , Cuidados Paliativos/normas , Ensaios Clínicos Controlados Aleatórios como Assunto/estatística & dados numéricos , Sujeitos da Pesquisa/psicologia , Gestão de Riscos/normas , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/tendências , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Gestão de Riscos/métodos , Gestão de Riscos/tendênciasRESUMO
OBJECTIVES: Assisted suicide in Switzerland is mainly performed by right-to-die societies. Medical involvement is limited to the prescription of the drug and certification of eligibility. Palliative care has traditionally been perceived as generally opposed to assisted suicide, but little is known about palliative care physicians' involvement in assisted suicide practices. This paper aims to describe their perspectives and involvement in assisted suicide practices. METHODS: A qualitative interview study was conducted with 23 palliative care physicians across Switzerland. Thematic analysis was used to interpret data. RESULTS: Swiss palliative care physicians regularly receive assisted suicide requests while none reported having received specific training in managing these requests. Participants reported being involved in assisted suicide decision making most were not willing to prescribe the lethal drug. After advising patients of the limits on their involvement in assisted suicide, the majority explored the origins of the patient's request and offered alternatives. Many participants struggled to reconcile their understanding of palliative care principles with patients' wishes to exercise their autonomy. The majority of participants had no direct contact with right-to-die societies, many desired better collaboration. A desire was voiced for a more structured debate on assisted suicide availability in hospitals and clearer legal and institutional frameworks. CONCLUSIONS: The Swiss model of assisted suicide gives palliative care physicians opportunities to develop roles which are compatible with each practitioner's values, but may not correspond to patients' expectations. Specific education for all palliative care professionals and more structured ways to manage communication about assisted suicide are warranted.
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Cuidados Paliativos/estatística & dados numéricos , Padrões de Prática Médica , Suicídio Assistido/estatística & dados numéricos , Adulto , Idoso , Atitude do Pessoal de Saúde , Tomada de Decisão Clínica , Comunicação , Estudos Transversais , Prescrições de Medicamentos/estatística & dados numéricos , Etnicidade , Feminino , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Hospitais/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Médicos/psicologia , Médicos/estatística & dados numéricos , Pesquisa Qualitativa , Suicídio Assistido/legislação & jurisprudência , Suicídio Assistido/psicologia , SuíçaRESUMO
INTRODUCTION: Many people living with advanced dementia live and die in nursing care homes. The quality of life, care and dying experienced by these people is variable. Namaste Care is a multisensory programme of care developed for people with advanced dementia. While there is emerging evidence that Namaste Care may be beneficial for people with dementia, there is a need to conduct a feasibility study to establish the optimum way of delivering this complex intervention and whether benefits can be demonstrated in end-of-life care, for individuals and service delivery. The aim of the study is to ascertain the feasibility of conducting a full trial of the Namaste Care intervention. METHODS AND ANALYSIS: A feasibility study, comprising a parallel, two-arm, multicentre cluster controlled randomised trial with embedded process and economic evaluation. Nursing care homes (total of eight) who deliver care to those with advanced dementia will be randomly allocated to intervention (delivered at nursing care home level) or control. Three participant groups will be recruited: residents with advanced dementia, informal carers of a participating resident and nursing care home staff. Data will be collected for 6 months. Feasibility objectives concern the recruitment and sampling of nursing homes, residents, informal carers and staff; the selection and timing of primary (quality of dying and quality of life) and secondary clinical outcome measures (person centredness, symptom presence, agitation, quality of life, resource use and costs and residents' activity monitored using actigraphy). Acceptability, fidelity and sustainability of the intervention will be assessed using semistructured interviews with staff and informal carers. ETHICS AND DISSEMINATION: This protocol has been approved by NHS Wales Research Ethics Committee 5 (ref: 17/WA0378). Dissemination plans include working with a public involvement panel, through a website (http://www.namastetrial.org.uk), social media, academic and practice conferences and via peer reviewed publications. TRIAL REGISTRATION NUMBER: ISRCTN14948133; Pre-results.
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Demência/enfermagem , Instituição de Longa Permanência para Idosos/estatística & dados numéricos , Casas de Saúde/estatística & dados numéricos , Assistência Terminal/métodos , Idoso , Idoso de 80 Anos ou mais , Estudos de Viabilidade , Feminino , Humanos , Masculino , Qualidade de VidaRESUMO
BACKGROUND: Effective integration between hospices, palliative care services and other local health care services to support patients with palliative care needs is an important international priority. A previous model suggests that integration involves a cumulative stepped process of engagement with other organisations labelled as 'support, supplant or supplement', but the extent to which this model currently applies in the United Kingdom is unknown. We aimed to investigate accounts of hospice integration with local health care providers, using the framework provided by the model, to determine how service users and healthcare professionals perceived palliative care services and the extent of integration experienced. METHODS: Longitudinal organisational case study methods were employed using qualitative serial interviews (interval 3 months) with patients and family carers focusing on how services responded to their needs; and group interviews with health professionals. Data were audio-recorded, transcribed verbatim, and analysed by qualitative content analysis and combined across data sources. RESULTS: The study focused on four hospices in northern England, including 34 patients (diagnosis: 17 cancer, 10 COPD, 7 heart failure), 65% female, mean age 66 (range 44-89), 13 family carers of these patients (48% partners), and 23 health care professionals. While some care fell short of expectations, all patients reported high levels of satisfaction and valued continuity of care and efficient information sharing. All hospices supported and supplemented local providers, with three hospices also supplanting local provision by providing in-patient facilities. CONCLUSION: UK hospices predominantly operate in ways that support and supplement other providers. In addition, some also supplant local services, taking over direct responsibility and funding in-patient care. They all contributed to integration with local services, with greater blurring of boundaries than defined by the original model. Integrated care offers the necessary flexibility to respond to changes in patient needs, however, constraints from funding drivers and a lack of clear responsibilities in the UK can result in shortfalls in optimal service delivery. Integrating hospice care with local healthcare services can help to address demographic changes, predominantly more frail older people, and disease factors, including the needs of those with non-malignant conditions. This model, tested in the UK, could serve as an example for other countries.
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Hospitais para Doentes Terminais/métodos , Cuidados Paliativos/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Prestação Integrada de Cuidados de Saúde , Inglaterra , Feminino , Necessidades e Demandas de Serviços de Saúde , Hospitais para Doentes Terminais/organização & administração , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos de Casos Organizacionais , Cuidados Paliativos/organização & administração , Pesquisa QualitativaRESUMO
BACKGROUND: Despite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. We aimed to develop evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field. METHODS: The Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation. We synthesised all findings to develop a guidance statement on the best methods to research EoLC. RESULTS: We integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project. CONCLUSIONS: The MORECare statement provides 36 best practice solutions for research evaluating services and treatments in EoLC to improve study quality and set the standard for future research. The statement may be used alongside existing statements and provides a first step in setting common, much needed standards for evaluative research in EoLC. These are relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors.