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Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy
BACKGROUND: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. AIM: To examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries. DESIGN: Cross-sectional telephone survey, in March 2020. SETTING: Italian hospices, purposively sampled according to COVID-19 regional prevalence categorised as high (>25), medium (15–25) and low prevalence (<15) COVID-19 cases per 100,000 inhabitants. A brief questionnaire was developed to guide the interviews. Analysis was descriptive. RESULTS: Seven high, five medium and four low prevalence hospices provided data. Two high prevalence hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute planning response. CONCLUSION: The hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential. Hospices may also need to be proactive in connecting with the acute pandemic response.
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Current HIV/AIDS end-of-life care in sub-Saharan Africa: a survey of models, services, challenges and priorities
In: http://www.biomedcentral.com/1471-2458/3/33
Abstract Background In response to increased global public health funding initiatives to HIV/AIDS care in Africa, this study aimed to describe practice models, strategies and challenges to delivering end-of-life care in sub-Saharan Africa. Methods A survey end-of-life care programs was conducted, addressing the domains of service aims and configuration, barriers to pain control, governmental endorsement and strategies, funding, monitoring and evaluation, and research. Both closed and qualitative responses were sought. Results Despite great structural challenges, data from 48 programs in 14 countries with a mean annual funding of US $374,884 demonstrated integrated care delivery across diverse settings. Care was commonly integrated with all advanced disease care (67%) and disease stages (65% offering care from diagnosis). The majority (98%) provided home-based care for a mean of 301 patients. Ninety-four percent reported challenges in pain control (including availability, lack of trained providers, stigma and legal restrictions), and 77% addressed the effects of poverty on disease progression and management. Although 85% of programs reported Government endorsement, end-of-life and palliative care National strategies were largely absent. Conclusions The interdependent tasks of expanding pain control, balancing quality and coverage of care, providing technical assistance in monitoring and evaluation, collaborating between donor agencies and governments, and educating policy makers and program directors of end-of-life care are all necessary if resources are to reach their goals.
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Multi-centred mixed-methods PEPFAR HIV care & support public health evaluation: study protocol
BACKGROUND: A public health response is essential to meet the multidimensional needs of patients and families affected by HIV disease in sub-Saharan Africa. In order to appraise current provision of HIV care and support in East Africa, and to provide evidence-based direction to future care programming, and Public Health Evaluation was commissioned by the PEPFAR programme of the US Government. METHODS/DESIGN: This paper described the 2-Phase international mixed methods study protocol utilising longitudinal outcome measurement, surveys, patient and family qualitative interviews and focus groups, staff qualitative interviews, health economics and document analysis. Aim 1) To describe the nature and scope of HIV care and support in two African countries, including the types of facilities available, clients seen, and availability of specific components of care [Study Phase 1]. Aim 2) To determine patient health outcomes over time and principle cost drivers [Study Phase 2]. The study objectives are as follows. 1) To undertake a cross-sectional survey of service configuration and activity by sampling 10% of the facilities being funded by PEPFAR to provide HIV care and support in Kenya and Uganda (Phase 1) in order to describe care currently provided, including pharmacy drug reviews to determine availability and supply of essential drugs in HIV management. 2) To conduct patient focus group discussions at each of these (Phase 1) to determine care received. 3) To undertake a longitudinal prospective study of 1200 patients who are newly diagnosed with HIV or patients with HIV who present with a new problem attending PEPFAR care and support services. Data collection includes self-reported quality of life, core palliative outcomes and components of care received (Phase 2). 4) To conduct qualitative interviews with staff, patients and carers in order to explore and understand service issues and care provision in more depth (Phase 2). 5) To undertake document analysis to appraise the clinical care procedures at each facility (Phase 2). 6) To determine principle cost drivers including staff, overhead and laboratory costs (Phase 2). DISCUSSION: This novel mixed methods protocol will permit transparent presentation of subsequent dataset results publication, and offers a substantive model of protocol design to measure and integrate key activities and outcomes that underpin a public health approach to disease management in a low-income setting.
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Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe
Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.
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Learning from the public:citizens describe the need to improve end-of-life care access, provision and recognition across Europe
In: Daveson , B A , Alonso , J P , Calanzani , N , Ramsenthaler , C , Gysels , M , Antunes , B , Moens , K , Groeneveld , E I , Albers , G , Finetti , S , Pettentati , F , Bausewein , C , Higginson , I J , Harding , R , Deliens , L , Toscani , F , Ferreira , P L , Ceulemans , L , Gomes , B & on behalf of PRISMA 2014 , ' Learning from the public : citizens describe the need to improve end-of-life care access, provision and recognition across Europe ' European Journal of Public Health , vol 24 , no. 3 , pp. 521-527 . DOI:10.1093/eurpub/ckt029
BACKGROUND: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. METHODS: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. RESULTS: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. CONCLUSIONS: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within-and between-country variance; establish standards for training, education and service delivery.
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Common elements of service delivery models that optimise quality of life and health service use among older people with advanced progressive conditions: a tertiary systematic review
INTRODUCTION: Health and social care services worldwide need to support ageing populations to live well with advanced progressive conditions while adapting to functional decline and finitude. We aimed to identify and map common elements of effective geriatric and palliative care services and consider their scalability and generalisability to high, middle and low-income countries. METHODS: Tertiary systematic review (Cochrane Database of Systematic Reviews, CINAHL, Embase, January 2000–October 2019) of studies in geriatric or palliative care that demonstrated improved quality of life and/or health service use outcomes among older people with advanced progressive conditions. Using frameworks for health system analysis, service elements were identified. We used a staged, iterative process to develop a 'common components' logic model and consulted experts in geriatric or palliative care from high, middle and low-income countries on its scalability. RESULTS: 78 studies (59 geriatric and 19 palliative) spanning all WHO regions were included. Data were available from 17 739 participants. Nearly half the studies recruited patients with heart failure (n=36) and one-third recruited patients with mixed diagnoses (n=26). Common service elements (≥80% of studies) included collaborative working, ongoing assessment, active patient participation, patient/family education and patient self-management. Effective services incorporated patient engagement, patient goal-driven care and the centrality of patient needs. Stakeholders (n=20) emphasised that wider implementation of such services would require access to skilled, multidisciplinary teams with sufficient resource to meet patients' needs. Identified barriers to scalability included the political and societal will to invest in and prioritise palliative and geriatric care for older people, alongside geographical and socioeconomic factors. CONCLUSION: Our logic model combines elements of effective services to achieve optimal quality of life and health service use among older ...
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