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INTRODUCTION: The 500 community hospitals in the UK provide a range of services to their communities. The response of these small, mainly rural, hospitals to the COVID-19 pandemic has not yet been examined and so this study sought to address this gap. METHOD: Appreciative inquiry was used to understand staff perspectives of how community hospitals responded to the COVID-19 (SARS-CoV-2) pandemic. A total of 20 organisations participated, representing 168 (34%) community hospitals in the UK. Qualitative interviews were conducted, with a total of 85 staff members, using an online video platform. 30 case studies were developed from these interviews. RESULTS: Staff described positive changes that were made in the context of the fear and uncertainty experienced in the pandemic. Quality improvements were reported in a wide range of services and models of care such as the use of the inpatient beds, and the access and management of urgent care services. Rapid changes were made in the way that services were managed, such as communications and leadership. Programmes of accelerated training were offered for existing and redeployed staff. Attention to staff health and well-being was a feature and there were a variety of innovations designed to support patients and their families. The impact of the changes was viewed as strengthening of integrated working between staff and sectors, the ability to rapidly innovate and improve quality, and the scope to use local decision-making to make changes. CONCLUSION: Staff of community hospitals described innovative and rapid quality improvements in their community hospitals in response to the pandemic. The case studies illustrated the features of community hospitals, showing that they can be resilient, flexible, responsive, creative, compassionate and integrated. The case studies of quality improvements are being used to encourage sharing and learning across community hospitals and beyond.

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BACKGROUND: GPs were a key driving force for the development of a network of community hospitals across England, and have provided medical cover for most of them. However, during the past decade there has been a significant shift, with the dominant trend appearing to be one of declining GP involvement. AIM: To explore how and why the role of GPs within community hospitals in England is changing. DESIGN AND SETTING: Qualitative study in a sample of nine diverse community hospitals in England. METHOD: Qualitative interviews with community hospital clinical staff. RESULTS: In all, 20 interviews were conducted and two models of medical care observed: GPs employed by a practice and trust-employed doctors. Interviewees confirmed the trend towards declining GP involvement, with the factors driving change identified as being GP workload and recruitment challenges, a change from 'step-up' admissions from the community to 'step-down' admissions from acute hospitals, fewer local patients being admitted, increased medical acuity of patients admitted, increased burden of medical support required, and inadequate remuneration. The majority of doctors viewed community hospital work in a positive light, welcoming the opportunities for personal development and to acquire new clinical skills. GPs viewed community hospital work as an extension of primary care, adding to job satisfaction. CONCLUSION: Multiple factors have driven changes in the role of GP community hospital clinicians. The NHS needs to develop a focused strategy if GPs are to remain engaged with community hospital work.

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BACKGROUND: Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. AIM: To illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult. DESIGN: A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011-2013 on the experiences of adult family carers ( n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions. Interviews occurred post-bereavement. This article reports on a subset of participants' interview transcripts ( n = 30) where narrative analysis was undertaken. SETTING/PARTICIPANTS: Carers were interviewed in their home setting, having been purposively recruited via general practitioner practices in two study sites in England. The subset of participants ( n = 30) was purposively selected from the parent sample with reference to carers' age, relationship to the patient, family circumstances and study sites. RESULTS: Evidence is provided on the importance of what we conceptualise as carers' 'relevant background worries'; these varied in nature, significance and impact. Four case studies are presented where these worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. CONCLUSION: It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries.

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BACKGROUND: older people aged 80 and over are increasingly providing end-of-life care to spouses at home and often do so for long periods of time, while also trying to manage their own illnesses and disabilities. Little of the research on older spousal carers has focussed on the oldest carers; hence, the needs of this particular population are not fully known. OBJECTIVE: to explore the experiences of the 'oldest carers' in caring for a dying spouse at home. METHODS: secondary analysis was undertaken on a subset of data from a larger qualitative interview study; this dataset comprised 17 interviews from participants aged 80 or over. Framework analysis methods were used, with items derived from the thematic analysis of the main study. RESULTS: the oldest carers in this subset demonstrated high levels of resilience and the ability to adapt to their caring role. Caring until death was accepted as an integral part of the commitment made to their partner as part of the 'wedding contract'. Carers felt they benefitted from the support provided by family, friends and care services; however, their own care needs were not always recognised by health and social care services. CONCLUSIONS: these findings underscore the complexity of the oldest carers' experiences and challenges in times of illness and end of life. Healthcare professionals should be alerted to the myriad ways caregiving is enacted in serious illness and seek opportunities for developing supportive interventions specifically for older carers.

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Public Health England (2013) survey data indicates that while the place of death is geographically uneven across England, given a choice, many older people nearing end of life would prefer to die at home. There is, however, a growing critique that policies designed to support home death fail to understand the needs and preferences of older people and the impact on family carers. Such policies also make assumption about within whose home the home death takes place. Hence, there are major gaps in our understanding of firstly, where and how care work undertaken by family members within domestic settings takes place; and secondly, how it can create tensions between home and care that fundamentally disrupt the physical and socio-emotional meaning of home for family carers, impacting on their sense of home post-death. This can have consequences for their own well-being. In this paper we draw on interview data from our 'Unpacking the Home' study to elicit an in-depth understanding of how facilitating a home death can create an ambiguity of place for family carers, where the issues faced by them in caring for a dying older person at home, and the home death itself, can fundamentally reshape the meaning and sense of home.

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OBJECTIVES: To determine the importance of fear and anxiety at the time of an exacerbation of chronic obstructive pulmonary disease. To assess the influence of carers and health professionals on this fear and anxiety. DESIGN: A qualitative study to elicit the views of patients and their carers during a hospital admission for exacerbations of chronic obstructive pulmonary disease. SETTING: Interviews were conducted in a District General Hospital. PARTICIPANTS: Twenty patients were interviewed shortly after admission to hospital with an exacerbation. MAIN OUTCOME MEASURES: Key themes were identified using cross-sectional thematic analysis of transcripts where commonalities and differences were identified. RESULTS: Four themes emerged: panic and fear; anxiety management techniques used during an exacerbation; intervention from family members and carers; response to medical services. CONCLUSION: Panic and fear are important emotions prior to admission. Many patients recognised the link between panic-fear and a worsening of symptoms, and some were able to use self-management techniques to reduce their panic-fear. Some relatives were seen as helping and others exacerbating the symptoms of panic-fear. The emergency services were seen as positive: providing reassurance and a sense of safety. How best to help patients with chronic obstructive pulmonary disease manage panic and fear remains a challenge.

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OBJECTIVE: To explore how bereaved family members recall managing end of life medications when delivering care to a patient dying at home in England. DESIGN: Qualitative study. SETTING: Domestic homes in two contrasting areas in England. PARTICIPANTS: 59 bereaved family carers who have delivered care to a patient who spent a minimum of 2 weeks at home prior to their death from cancer or other non-malignant condition. Cases were excluded if the place of death was: a hospice, nursing home or National Health Service (NHS) hospital. RESULTS: Participants identified a number of important concerns about managing end of life medication for the dying person at home. Although some support with medications is provided by general practitioners and nurses in the community, family carers take primary responsibility for drug administration and storage. They reported anxiety about giving correct and timely dosages, and concerns about keeping the patient comfortable without overdosing them or risking shortening their lives. In particular, they reported that certain analgesic medications, especially opioids, were considered to have a symbolic significance increasing analgesia requirements, and the use of a syringe driver was associated with deterioration and approaching death. Key barriers to managing end of life medications at home included: complex regimes; unwanted responsibility in deciding when to use 'as needed' medication; disagreements with professional staff, and anxiety about medication errors, especially if perceived to have implications for survival. CONCLUSIONS: Family carers require more information about end of life drugs and their effects, support and training in managing medication for a dying person.

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BACKGROUND: Dying at home is the preference of many patients with life-limiting illness. This is often not achieved and a key factor is the availability of willing and able family carers. AIM: To elicit family carers' views about the community support that made death at home possible. DESIGN AND SETTING: Qualitative study in East Devon, North Lancashire, and Cumbria. METHOD: Participants were bereaved family carers who had provided care at the end of life for patients dying at home. Semi-structured interviews were conducted 6-24 months after the death. RESULTS: Fifty-nine bereaved family carers were interviewed (54% response rate; 69% female). Two-thirds of the patients died from cancer with median time of home care being 5 months and for non-cancer patients the median time for home care was 30 months. An overarching theme was of continuity of care that divided into personal, organisational, and informational continuity. Large numbers and changes in care staff diluted personal continuity and failure of the GPs to visit was viewed negatively. Family carers had low expectations of informational continuity, finding information often did not transfer between secondary and primary care and other care agencies. Organisational continuity when present provided comfort and reassurance, and a sense of control. CONCLUSION: The requirement for continuity in delivering complex end-of-life care has long been acknowledged. Family carers in this study suggested that minimising the number of carers involved in care, increasing or ensuring personal continuity, and maximising the informational and organisational aspects of care could lead to a more positive experience.

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BACKGROUND: Chronic non-cancer pain (CNCP) is common in the UK. GPs manage most patients with such pain. Previous research has suggested that prescribing is influenced by patient and doctor factors, but less is known about the decision- making process involved in prescribing opioid drugs for CNCP. AIM: To describe the factors influencing GPs' prescribing of strong opioid drugs for CNCP. Design and setting Semi-structured interviews and a focus group of a purposive sample of GPs from a range of practice settings including male and female GPs with experience of prescribing strong opioids. METHOD: Transcripts of interviews and a focus group were analysed using qualitative research methodology (thematic analysis). RESULTS: GPs described prescribing opioid drugs for patients with CNCP as being different from treating cancer related pain. GPs followed accepted stepwise approaches in their prescribing for CNCP. They reported difficulty in assessing the level of pain and concern over duration of use of strong opioids and their possible side effects, tolerance, and addiction. Variation in reported practice was observed, which may be linked to experience and significant events. CONCLUSION: GPs in this study demonstrated a thoughtful attitude towards prescribing strong opioids for CNCP. They were aware of the difficulties of long-term strong opioid prescription. Only a few GPs had had specific training in chronic pain management and this may explain some of the variation in practice reported. GPs may benefit from training in pain assessment and long-term management of patients with CNCP.

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AIM: To work with service users and providers to optimise the design and implementation of handover forms to support the transfer of information between daytime and out-of-hours primary care services for patients with palliative care needs. BACKGROUND: There is a need for improved informational continuity between daytime and out-of-hours primary care services for patients with palliative care needs. Research suggests that while handover forms are vital to ensure continuity of care, they remain underused for such patients. Audit work in an out-of-hours primary care service in South West England identified that their current system of handover forms was underused. METHODS: An action research study consisting of two phases was undertaken. In phase one, the views of general practitioners and nurses working in the out-of-hours and daytime primary care services (29 health professionals) in Devon (population c.1.4 million) and patients with palliative care needs and their carers (8 participants) were investigated using qualitative interviews and focus group methods. Participants' views on the content and use of handover forms, and of the systems supporting their generation were sought. In phase two, additional feedback from the health professional stakeholder groups was collected and collaborative work undertaken with the out-of-hours service to implement recommendations emerging from the qualitative research. Findings Respondents identified variable use of handover forms and inconsistent practice in terms of: who was responsible for generating and updating forms; when and where they were discussed in primary care; the criteria used to define which patient needed a form; and the information forms should contain. There was uncertainty about how handover forms were used by the out-of-hours service and concerns about incomplete access to forms for certain groups of staff. An action plan to improve the existing system was developed. This included distribution of educational materials (desktop guide, newsletter) to key stakeholders, and the modification of information systems to facilitate the updating of messages and the accessibility of electronic records for previously under-served staff.

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BACKGROUND: Recent end of life care policy prioritises patient choice over place of care and in particular promotes dying at home. This policy is predicated on the assumption that there are family carers able and willing to provide care for the dying person. Through the accounts of bereaved family members, the 'Unpacking the home' study aims to gain an in-depth understanding of 'home' and the issues faced by family members caring for a dying older person at home; it also aims to examine the way the home is transformed in the process of providing end of life care, and offer a critical analysis of policies that aim to increase home deaths. This paper presents the protocol for this study. METHODS/DESIGN: A cross-sectional qualitative study has been designed to achieve the study aims. In-depth interviews will be conducted in the north and south of England with 50 bereaved family carers to elicit their accounts of witnessing the dying in the home of an older person (50+ years). All interviews will be subjected to thematic analysis, and narrative analysis will be undertaken on a subset of 30 interview transcripts. A final phase of integration and policy analysis will be conducted towards the end of the study. User involvement is integral to this study, with service users actively engaged at every stage. DISCUSSION: This study will seek to take a qualitative approach by explicitly recognising that family carers are central to the experience of dying at home for older people, and they have needs that may be amenable to support and anticipatory planning. The strengths of this study, which include its interdisciplinary and participatory approach, and in-depth data collection and analysis methods, will be explored. The limitations and challenges of this research will also be considered. This study seeks to make recommendations that will ensure that family carers receive appropriate and adequate support in caring for their loved ones at the end of life.

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We report patients, family members and health professionals' experiences of Chronic Obstructive Pulmonary Disease (COPD) in Barnsley, northern England. A widespread belief that having "bad lungs" is part of normal ageing shapes everyday experience in this former mining town. People with COPD, and their families, link its cause to the areas industrial past and are sceptical of a medical orthodoxy that attributes cause to smoking. They doubt doctors' objectivity. Encouraging uptake of care, promoting smoking cessation, and developing care planning would be enhanced by engaging with the significance of place in the social narrative of health evident in this town.

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CONTEXT: The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identified that patients with chronic obstructive pulmonary disease and heart failure have a poor understanding of their condition. OBJECTIVES: To identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups. METHODS: A comprehensive literature review of studies describing communication interventions for patients receiving end-of-life care was undertaken. Ten electronic databases were searched. Inclusion criteria were all English language studies relating to patient-professional communication interventions for patients with life-limiting conditions receiving end-of-life care. RESULTS: Of the 755 articles initially identified, 16 met the inclusion criteria. Three core themes emerged from the synthesis of the literature: using education to enhance professional communication skills, using communication to improve patient understanding, and using communication skills to facilitate advance care planning. CONCLUSION: Although limited, evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses would suggest that a successful intervention should include combined components of training, patient discussion, and education. In a context of limited resources and an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy.

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BACKGROUND: It is recognised that patients with chronic obstructive pulmonary disease (COPD) should have the chance to discuss end-of-life care and advance care planning (ACP). Admission to hospital with an exacerbation may be a possible opportunity. AIMS: To examine whether an admission to hospital for an exacerbation of COPD is an opportunity for ACP and to understand, from the patient perspective, the optimum circumstances for ACP. METHODS: Patients who had a recent admission for an exacerbation of COPD were identified. Sixteen patients and their carers were interviewed. The interviews were analysed using qualitative methodology. RESULTS: No patients recalled discussions about resuscitation or planning for the future. Hospital admission and discharge was seen as chaotic and lacking in continuity. Some patients welcomed the opportunity to discuss ACP and felt that their general practitioner (GP) would be the best person for this. Others wished to avoid end-of-life care discussions but there was evidence that, with empathetic and knowledgeable support, these discussions could be initiated. CONCLUSIONS: The period of hospitalisation may not be an appropriate time to initiate ACP but may be a milestone that can lead to discussions. GPs should be alert to that opportunity after discharge from hospital.

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AIM: To explore the experiences of people with advanced cancer and/or their caregivers accessing out-of-hours care. BACKGROUND: The organisation and delivery of out-of-hours in the United Kingdom has undergone major reforms over the past three decades culminating in the new General Medical Service contract in 2004. There are concerns around continuity of care for patients with complex needs under the new arrangements. DESIGN: A qualitative interview study was undertaken recruiting patients from two primary care trusts in Southwest England. Semi-structured interviews were conducted with 28 people with advanced cancer and/or their caregivers who had recently requested out-of-hours care. Interviews were recorded, transcribed and analysed thematically. FINDINGS: Two main themes were identified including the legitimacy of seeking help and continuities of care. Most participants were reluctant to seek help, finding it difficult to decide whether their needs were sufficient to contact services. The degree to which services legitimised participants' requests mediated their experiences. Distress arose when services were dismissive of their needs, whereas respondents were appreciative of clinicians who provided them with reassurance. Participants reported a lack of relational and informational continuity of care. Consulting with an unfamiliar clinician out-of-hours raised doubts in some participants' minds about the quality of care. Some participants recounted episodes in which there were problems with pain management. While the themes suggest that the delivery of out-of-hours care as a whole was not always perfect, around-the-clock access to professional sources of support and reassurance was highly valued. However, the transfer of information to out-of-hours providers remains a key challenge; participants did not understand why out-of-hours providers could not access more information on their medical histories given the level of computerisation within the National Health Service. The findings highlight the need to improve continuity between in-hours and out-of-hours services for patients with complex needs.

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The challenges associated with patient-based research in palliative care are well documented. This paper focuses on the ethical challenges and discusses them in the context of a pilot study to explore the palliative-care needs of patients with moderate and severe chronic obstructive pulmonary disease. The main ethical challenge encountered related to problems surrounding the use of terminology, specifically the terms 'palliative care' and 'chronic obstructive pulmonary disease'. The approving ethics committee specified that these terms be removed from all patient materials in order to protect patients from undue distress. The impact of this ethical advice on patients' ability to give fully informed consent is discussed. This paper highlights a requirement for appropriately resourced and well-managed studies in palliative care, and identifies a need for the development of appropriate strategies in order to ensure the informed participation of patients with non-cancer diagnoses in palliative-care research.

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Chronic obstructive pulmonary disease (COPD) is a highly prevalent condition worldwide and is associated with significant mortality. This paper gives an overview of the relevant literature regarding care needs in advanced COPD from the perspective of the patient or carer, and aims to explore the appropriateness of a palliative care approach in this group. Publications revealed that patients with COPD have a high symptom burden that impacts on quality of life and social functioning. Information provision in COPD is often lacking and the implications of diagnosis and prognosis are not routinely discussed. The impact on families and carers is considerable, many patients have significant care requirements which can affect family relationships. Although patients with COPD have regular contact with health services, access to specialist services and palliative care is poor. This paper highlights the need for increased provision for palliative care in COPD, alongside dedicated education and training for health professionals, and continued research to identify the most appropriate ways of delivering this care.

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Prognosis in COPD is poor and many patients perceive shortcomings in the education they receive about aspects of their condition. This study explores the experiences of patients with COPD, particularly fears surrounding death and dying. Semi-structured interviews were conducted with 21 patients with moderate or severe COPD. Findings revealed that patient understanding of COPD was poor, most patients were unaware of the progressive nature of the condition, and few were aware they could die of COPD. Despite this, patients often expressed concerns that their condition might deteriorate. Patients had particular concerns regarding the manner of their death; the overriding fear was dying of breathlessness or suffocation. None of the patients' had discussed these fears with a health care professional. Improved patient education is needed in order to improve patients understanding of their condition and prognosis. Open communication regarding death, as advocated in a palliative care approach, is also appropriate to alleviate patients fears and to allow them to make decisions regarding the management of their care at the end of life.

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