"Backlash!"? A qualitative exploration of hospice palliative care staff's ongoing experiences of "living with covid".

Background: "Living with covid" has meant that the SARS-CoV-2 virus has become a background concern for many in the United Kingdom. However, people with terminal conditions remain some of those at higher risk of Covid-19 affecting the quality-of-life left, as well as the amount of life. Little is known about how staff manage the ongoing risks and challenges-to themselves and those they seek to support-when providing palliative care in the context of an airborne transmissible virus. Objective: To explore the experiences of UK hospice staff of "living with covid" to identify how Covid-19 continues to affect their work and well-being. Design: An interpretivist qualitative interview study. Methods: Reflexive thematic analysis of semi-structured online interviews with 12 staff recruited from three hospices in the West Midlands, UK. Results: We explored how participants' accounts of "living with covid" included several ambivalences: Participants not only sought to assert the importance of not forgetting that time but also wished to "move-on." This included moving Covid-19 to the "background" through embedding systemic adaptions and lessons learnt, while also recognizing that they had to address issues relating to Covid-19 "case-by-case." Finally, participants' wish to move-on and a mostly reactive approach to mitigations meant that they were unable to meaningfully reconcile how asymptomatic transmission promotes patients' quality-of-life left. Conclusion: Recollections of the difficulties of the Covid-19 public health emergency were part of a "backlash" to any future consideration of mitigations for airborne transmissible viruses and helped justify a "living with (getting) covid" approach. However, this also created uncertainty of how best to support patients who are vulnerable to having the quality and amount of life left compromised by viral infection. The pandemic has brought renewed impetus to re-examine hospice palliative care's ideals and practices in the context of airborne transmissible viruses.

Setting Regional Priorities for Palliative and End-of-Life Care Research Using a Delphi Technique Approach.

OBJECTIVE: Identifying research priorities is very important for palliative and end-of-life care to ensure research is focused on evidence gaps. This project aimed to identify and prioritise palliative and end-of-life care research areas within the West Midlands region in United Kingdom (UK). METHODS: A modified Delphi technique approach was used with palliative care stakeholders. The first round was item generation via rapid interviews. Data were analysed using content analysis and all the items were grouped into main categories. For round two, an online survey was conducted to present all the items from round one, and stakeholders were asked to rate the priority of items on a Likert-type scale (1 = not a priority to 7 = essential priority). Items that achieved consensus in round two were presented to the third round, where stakeholders ranked them in descending order. RESULTS: We completed and analysed 56 rapid interviews which resulted in 158 research items under 15 categories. The research items were rated by 30 stakeholders and seven items which reached consensus were subsequently ranked in order by 45 stakeholders. The highest ranked item was 'Integrated care systems to prevent crisis', followed by three research items related to 'equity' in palliative care. CONCLUSIONS: Our research priorities, although unique for our region, mirror previously research priorities from other regions and countries. This suggests issues of integration and equity in palliative and end-of-life care remain unresolved, despite ongoing initiatives and research to address these issues.

Improving patients', carers' and primary care healthcare professionals' experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study.

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.

A mixed-methods systematic review investigating the use of digital health interventions to provide palliative and end-of-life care for patients in low- and middle-income countries.

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.

"Palliative care is so much more than that": a qualitative study exploring experiences of hospice staff and bereaved carers during the COVID-19 pandemic.

Background: The way in which end-of-life care was provided changed significantly during the first 2 years of the COVID-19 pandemic. The national lockdown restrictions reduced formal care support services and increased the burden on many carers taking on the caring role for the first time. We aimed to explore decision-making about the place of care during the COVID-19 pandemic and the impact on experience from the perspectives of carers and hospice staff caring for people at the end-of-life. Methods: A qualitative study using virtual interviews was conducted between October 2020 and April 2021. Data were analyzed thematically using framework analysis, an analytical framework that enables qualitative research to be organized into defined themes derived from the research question. Findings were presented to stakeholders in policy roundtables between March 2022 and March 2023 and discussed collaboratively with staff, stakeholders, and the public to inform policy and practice change. Findings: A total of 37 participants (15 bereaved carers and 22 staff) were recruited via hospice services in England and Scotland. Four key themes were identified: (1) changing preferences relating to decision-making about the place of care and the impact at the time of death and into bereavement; (2) missed opportunities related to not being there, not having others around, and being robbed of memory-making; (3) the lone carer during a period of high intensity and reduced home support; (4) process vs. person-centered care resulting from changing rules and restrictions and prioritization of regulations over essential palliative care. Conclusion: The study provides valuable global implications for all involved in end-of-life care. Despite great efforts to provide dignified, quality care, palliative care during the pandemic changed, focusing on essential 'physical care'. The psychological suffering experienced by staff and carers may need longer-term support mechanisms put in place, which will benefit from a public health approach. Policymakers should consider improving carer identification and resources for wider end-of-life care education to support the needs of carers, health and social care staff, and citizens.

Healthcare professionals' perspectives of the management of people with palliative care needs in the emergency department of a UK hospital.

BACKGROUND: The Emergency Department (ED) is not always the optimal place for people with palliative care needs but is the most common route for treatment when urgent care is sought. The aim of this study,''REasons for PalLIative Care Admissions (REPLICA)' was to explore the perspectives of ED healthcare professionals of hospital admission or discharge via ED for palliative care patients. METHODS: This is a sequential mixed methods study comprising (i) quantitative descriptive analysis of Hospital Episode Statistics (HES) of palliative care patients (code Z51.5) who were admitted through ED in a West Midlands Hospital and for the rest of England; (ii) in-depth semi-structured interviews with 17 ED staff which were analysed using thematic content analysis. RESULTS: Over the four years (2013-2017), 430,116 people admitted through ED were identified with a Z51.5 diagnosis code, 0.6% (n = 2736) of whom were from the West Midlands Hospital. The most common reasons for palliative care patients' admission to hospitals across England were for care of chronic kidney disease, cancers and urinary tract infections. Five themes were elicited from the qualitative analysis: (1) Providing palliative care in ED is challenging, due to factors including lack of training in palliative care and the unsuitable environment. (2) Patients go to ED due to challenges in community management such as inappropriate referrals and no care plan in place. (3) Health system influences admission and discharge decisions, including bed availability and being unable to set up community services out-of-hours. (4) Discussion with patient about treatment and end of life care needs to be outside of ED whilst the patient is still well enough to express their wishes. (5) Improving services for patients with palliative care needs. Recommendations include short training sessions for ED staff and accessing palliative care professionals 24/7. CONCLUSIONS: A large number of palliative care patients visit ED and are admitted to hospital for care; there is an urgent need to prevent patients attending the hospital through the establishment of a coordinated and dedicated service to support palliative care patients in the community.

The emotional effects on professional interpreters of interpreting palliative care conversations for adult patients: A rapid review.

BACKGROUND: Professional interpreters working in palliative contexts improve patient care. Whilst literature identifies psychological distress in other healthcare professionals, research into emotional effects on professional interpreters in this highly emotive setting is limited. Isolating emotional responses may enable targeted interventions to enhance interpreter use and improve wellbeing. Timely evidence is needed to urgently familiarise the profession with issues faced by these valuable colleagues, to affect practice. AIM: Describe the emotional effects on professional interpreters of interpreting adult palliative care conversations. Collate recommendations to mitigate negative emotional effects. DESIGN: We performed a rapid review of studies identifying emotional effects on professional interpreters of interpreting adult palliative conversations. Rapid review chosen to present timely evidence to relevant stakeholders in a resource-efficient way. Thematic analysis managed using NVivo. Quality appraisal evaluated predominantly using CASP checklists. Reported using PRISMA guidelines. PROSPERO registration CRD42022301753. DATA SOURCES: Articles available in English on PubMed [1966-2021], MEDLINE [1946-2021], EMBASE [1974-2021], CINAHL [1981-2021] and PsycINFO [1806-2021] in December 2021. RESULTS: Eleven articles from the USA (5), Australia (3), Canada (2) and UK (1). Eight interview-based, two online surveys and one quality improvement project. Themes included (1) Identifying diversity of emotional effects: emotions including stress, discomfort, loneliness. (2) Identifying factors affecting interpreters' emotional responses: impact of morals, culture and role expectations; working with patients and families; interpreter experience and age. (3) Recommendations to mitigate negative emotional effects: pre-briefing, debriefing and interpreter/provider training. CONCLUSION: Professional interpreters experience myriad emotional responses to palliative conversations. Role clarity, collaborative working and formal training may alleviate negative effects.

Challenges experienced by GPs when providing palliative care in the UK: a systematic qualitative literature review.

BACKGROUND: GPs in the UK will face increased palliative care demands in the coming years. Understanding what makes providing palliative care difficult for GPs is an important step to planning future services, but currently there is an absence of synthesised literature addressing this area. AIM: To identify the range of issues that affect GPs' provision of palliative care. DESIGN & SETTING: A qualitative systematic review and thematic synthesis of studies exploring GPs' experiences of providing palliative care in the UK. METHOD: Four databases (MEDLINE, Embase, Web of Science, and CINAHL [Cumulated Index to Nursing and Allied Health Literature]) were searched on 1 June 2022 to identify relevant primary qualitative literature published between 2008 and 2022. RESULTS: Twelve articles were included in the review. The following four themes were identified that affect GPs' experiences of providing palliative care: lack of resources to support palliative care provision; fragmented multidisciplinary team (MDT) approach; challenging communication with patients and carers; and inadequate training to address the complexities of palliative care. Pressures caused by increasing workloads and a lack of staffing combined with difficulty accessing specialist teams impeded GPs' provision of palliative care. Further challenges were deficiencies in GP training, and a lack of patient understanding or unwillingness to engage in palliative care discussions. CONCLUSION: A multifaceted approach focusing on increased resources, improved training, and a seamless interface between services, including improved access to specialist palliative teams when necessary, is needed to address the difficulties that GPs face in palliative care. Regular in-house MDT discussion of palliative cases and exploration of community resources could generate a supportive environment for GPs.

Online support groups for carers of people living with dementia: An investigation of videoconferencing support groups in lockdown.

BACKGROUND: This study aimed to explore the experiences of carers of people living with dementia who participated in videoconferencing support groups during the COVID-19 pandemic to investigate their preferences and experiences with online, hybrid, and face-to-face support. METHODS: This convergent mixed methods design study utilised an online questionnaire and semi-structured interviews. Interviews took place over videoconferencing software and were analysed through thematic analysis. Participants were recruited from support groups based in the UK and Ireland. RESULTS: 39 carers of people living with dementia completed the questionnaire and 16 carers participated in interviews. Participants found videoconferencing support groups more convenient, but face-to-face groups more enjoyable. Participants who had found it difficult to access face-to-face groups prior to COVID-19 expressed more positive perceptions of videoconference-based groups. Many felt that hybrid groups would make it easier for more people to attend. However, some carers described lacking the resources and technological skills to participate in online support groups effectively. Some suggested making IT training available may improve the capacity of carers to access support online. CONCLUSION: Videoconferencing support groups can be an appropriate way of supporting carers of people with dementia, especially for those who do not have access to face-to-face support groups. However, face-to-face support remains important to carers and should be made available when it can be implemented safely. Hybrid support groups could allow for increased accessibility while still providing the option of face-to-face contact for those who prefer it or are not adept with technology.

The Experiences of Informal Carers during the COVID-19 Pandemic: A Qualitative Systematic Review.

OBJECTIVES: To identify, critically appraise and synthesise the qualitative literature on the experiences of informal carers of people with long-term conditions during the COVID-19 pandemic. DESIGN: A qualitative systematic literature review. DATA SOURCES: Eight electronic databases were systematically searched (Medline, Embase, CINAHL, PubMed, PsychINFO, Web of Science, Nursing and Allied Health and ASSIA) along with Google Scholar and handsearching via secondary sources. STUDY SELECTION: Eligible studies had to include the experiences of informal carers (adults who are 65 or older), use a qualitative methodology and had to be written in English. DATA EXTRACTION AND SYNTHESIS: Retrieved papers were quality assessed using the Critical Appraisal Skills Programme qualitative checklist and ranked for quality. Thematic analysis was used to synthesise the findings. RESULTS: Fourteen studies were included, all from medical or nursing journals (n = 5 specifically gerontology). Four main themes were identified: (i) fear, (ii) uncertainty, (iii) burden and (iv) staying connected. Caregiving demands have increased for carers during the pandemic, as well as negative emotions such as fear and uncertainty. At the same time, less social support has been available, leading to concerns about carers' wellbeing and ability to cope. CONCLUSION: Carers' needs have been exacerbated by the COVID-19 pandemic. Greater practical and emotional support is needed for carers from both formal services and community sources that considers their changing needs and offers educational and emotional support for long-term wellbeing. Strengths and Limitations: (1) This is the first systematic review to explore in depth the experiences of informal carers caring for people with a range of long-term conditions and from an international context. (2) The review includes an analysis of the quality of the studies, as well as a study of their relative contributions. (3) Further research is needed to explore the physical, emotional and financial impact of the pandemic for bereaved carers which is not captured in this review due to the lack of empirical data available at the time of review.

Communication of palliative care needs in discharge letters from hospice providers to primary care: a multisite sequential explanatory mixed methods study.

BACKGROUND: The provision of palliative care is increasing, with many people dying in community-based settings. It is essential that communication is effective if and when patients transition from hospice to community palliative care. Past research has indicated that communication issues are prevalent during hospital discharges, but little is known about hospice discharges. METHODS: An explanatory sequential mixed methods study consisting of a retrospective review of hospice discharge letters, followed by hospice focus groups, to explore patterns in communication of palliative care needs of discharged patients and describe why these patients were being discharged. Discharge letters were extracted for key content information using a standardised form. Letters were then examined for language patterns using a linguistic methodology termed corpus linguistics. Thematic analysis was used to analyse the focus group transcripts. Findings were triangulated to develop an explanatory understanding of discharge communication from hospice care. RESULTS: We sampled 250 discharge letters from five UK hospices whereby patients had been discharged to primary care. Twenty-five staff took part in focus groups. The main reasons for discharge extracted from the letters were symptoms "managed/resolved" (75.2%), and/or the "patient wishes to die/for care at home" (37.2%). Most patients had some form of physical needs documented on the letters (98.4%) but spiritual needs were rarely documented (2.4%). Psychological/emotional needs and social needs were documented in 46.4 and 35.6% of letters respectively. There was sometimes ambiguity in "who" will be following up "what" in the discharge letters, and whether described patients' needs were resolved or ongoing for managing in the community setting. The extent to which patients received a copy of their discharge letter varied. Focus groups conveyed a lack of consensus on what constitutes "complexity" and "complex pain". CONCLUSIONS: The content and structure of discharge letters varied between hospices, although generally focused on physical needs. Our study provides insights into patterns associated with those discharged from hospice, and how policy and guidance in this area may be improved, such as greater consistency of sharing letters with patients. A patient-centred set of hospice-specific discharge letter principles could help improve future practice.

Addressing inequitable access to hospice care.

The 'Lancet Commission on the Value of Death' proposes radical change and challenges the very core of hospice service provision. Without action, inequalities in access to hospice care will continue to be amplified. The COVID-19 pandemic brought increased needs and demands in the community setting but also provided opportunities for new palliative partnerships and ways of working. Returning to the status quo should not be an option. Rather moving towards a shared vision and purpose, which has the person and their community network at its centre, enables hospices to have a pivotal role and bring about more equitable palliative care.

The impact of Covid-19 pandemic on hospices: A systematic integrated review and synthesis of recommendations for policy and practice.

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.

Hopeful dying? The meanings and practice of hope in palliative care family meetings.

Hope can carry considerable allure for people facing imminent mortality and for those who care for them. Yet, how hope is variously and relationally (re)produced within end-of-life care settings, remains under-researched. In this study, we aimed to better understand hope as it circulates within palliative care, drawing on video recorded family meetings and pre- and post-meeting qualitative interviews, within two hospitals in Queensland, Australia. Our findings highlight family meetings as an important site for articulations of hope and hopefulness. The results illustrate how hope is recalibrated within the transition to and through palliative care, the tensions between hope and futility, and the work of hope in discussions of goals and expectations. Through our analysis we argue that hopefulness within family meetings, and in palliative care more broadly, is collectively produced and opens up discourses of hope to the lived experience of terminality. Attending to the nuances of hope, including moving beyond the determinative (hope for more life/hope for a quick death), can elucidate the possibilities and problems of the collective negotiation of hope at the end of life, including how hope can be drawn on to express support and solidarity.

Implementing advance care planning in heart failure: a qualitative study of primary healthcare professionals.

BACKGROUND: Advance care planning (ACP) can improve the quality of life of patients suffering from heart failure (HF). However, primary care healthcare professionals (HCPs) find ACP difficult to engage with and patient care remains suboptimal. AIM: To explore the views of primary care HCPs on how to improve their engagement with ACP in HF. DESIGN AND SETTING: A qualitative interview study with GPs and primary care nurses in England. METHOD: Semi-structured interviews were conducted with a purposive sample of 24 primary care HCPs. Data were analysed using reflexive thematic analysis. RESULTS: Three main themes were constructed from the data: ACP as integral to holistic care in HF; potentially limiting factors to the doctor-patient relationship; and approaches to improve professional performance. Many HCPs saw the benefits of ACP as synonymous with providing holistic care and improving patients' quality of life. However, some feared that initiating ACP could irrevocably damage their doctor-patient relationship. Their own fear of death and dying, a lack of disease-specific communication skills, and uncertainty about the right timing were significant barriers to ACP. To optimise their engagement with ACP in HF, HCPs recommended better clinician-patient dialogue through question prompts, enhanced shared decision-making approaches, synchronising ACP across medical specialties, and disease-specific training. CONCLUSION: GPs and primary care nurses are vital to deliver ACP for patients suffering from HF. HCPs highlighted important areas to improve their practice and the urgent need for investigations into better clinician-patient engagement with ACP.

What makes palliative care needs "complex"? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care.

BACKGROUND: Specialist palliative care (SPC) providers tend to use the term 'complex' to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. METHODS: Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. RESULTS: Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. CONCLUSIONS: Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

What do we know about the impact of the Covid-19 pandemic on hospices? A collaborative multi-stakeholder knowledge synthesis.

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.

The convivial and the pastoral in patient-doctor relationships: a multi-country study of patient stories of care, choice and medical authority in cancer diagnostic processes.

Experiences of cancer diagnosis are changing in light of both the increasingly technological-clinical diagnostic processes and the socio-political context in which interpersonal relations take place. This has raised questions about how we might understand patient-doctor relationship marked by asymmetries of knowledge and social capital, but that emphasise patients' empowered choices and individualised care. As part of an interview study of 155 participants with bowel or lung cancer across Denmark, England and Sweden, we explored participants' stories of the decisions made during their cancer diagnostic process. By focusing on the intersections of care, choice and medical authority - a convivial pastoral dynamic - we provide a conceptual analysis of the normative ambivalences in people's stories of their cancer diagnosis. We found that participants drew from care, choice and medical authority to emphasise their relationality and interdependence with their doctors in their stories of their diagnosis. Importantly negotiations of an asymmetrical patient-doctor relationship were part of an on-going realisation of the healthcare processes as a human endeavour. We were therefore able to draw attention to the limitations of dichotomising emancipatory-empowerment discourses and argue for a theorisation of the patient-doctor relationship as a contextually bounded and relationally ambivalent humanity.

How do GPs and patients share the responsibility for cancer safety netting follow-up actions? A qualitative interview study of GPs and patients in Oxfordshire, UK.

OBJECTIVE: To explore patients' and General Practitioners' (GPs) accounts of how responsibility for follow-up was perceived and shared in their experiences of cancer safety netting occurring within the past 6 months. DESIGN: In-depth interviews were recorded and transcribed verbatim. Data were analysed through an abductive process, exploring anticipated and emergent themes. Conceptualisations of 'responsibility' were explored by drawing on a transactional to interdependent continuum drawing from the shared decision-making literature. SETTINGS AND PARTICIPANTS: A purposive sample of 25 qualified GPs and 23 adult patients in Oxfordshire, UK. RESULTS: The transactional sharing approach involves responsibility being passed from GP to patient. Patients expected and were willing to accept responsibility in this way as long as they received clear guidance from their GP and had capacity. In interdependent sharing, GPs principally aimed to reach consensus and share responsibility with the patient by explaining their rationale, uncertainty or by stressing the potential seriousness of the situation. Patients sharing this responsibility could be put at risk if no follow-up or timeframe was suggested, they had inadequate information, were falsely reassured or their concerns were not addressed at re-consultation. CONCLUSION: GPs and patients exchange and share responsibility using a combination of transactional and interdependent styles, tailoring information based on patient characteristics and each party's level of concern. Clear action plans (written where necessary) at the end of every consultation would help patients decide when to re-consult. Further research should investigate how responsibility is shared within and outside the consultation, within primary care teams and with specialist services.