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The COVID-19 pandemic has been followed intensely by the global news media, with deaths and bereavement a major focus. The media reflect and reinforce cultural conventions and sense-making, offering a lens which shapes personal experiences and attitudes. How COVID-19 bereavement is reported therefore has important societal implications. We aimed to explore the reportage and portrayal of COVID-19 related bereavement in the top seven most-read British online newspapers during two week-long periods in March and April 2020. We conducted a qualitative document analysis of all articles that described grief or bereavement after a death from COVID-19. Analysis of 55 articles was informed by critical discourse analysis and Terror Management Theory, which describes a psychological conflict arising between the realisation that death is inevitable and largely unpredictable and the human need for self-preservation. We identified three main narratives: (1) fear of an uncontrollable, unknown new virus and its uncertain consequences—associated with sensationalist language and a sense of helplessness and confusion; (2) managing uncertainty and fear via prediction of the future and calls for behaviour change, associated with use of war metaphors; and (3) mourning and loss narratives that paid respect to the deceased and gave voice to grief, associated with euphemistic or glorifying language (‘passed away’, ‘heroes’). Accounts of death and grief were largely homogenous, with bereavement due to COVID-19 presented as a series of tragedies, and there was limited practical advice about what to do if a loved one became seriously ill or died. Reporting reflected the tension between focusing on existential threat and the need to retreat from or attempt to control that threat. While the impact of this reporting on the public is unknown, a more nuanced approach is recommended to better support those bereaved by COVID-19.

The evaluation of public engagement health festivals is of growing importance, but there has been no synthesis of its practice to date. We conducted a systematic review of evidence from the evaluation of health-related public engagement festivals published since 2000 to inform future evaluation. Primary study quality was assessed using the Mixed Methods Appraisal Tool. Extracted data were integrated using narrative synthesis, with evaluation methods compared with the Queen Mary University of London public engagement evaluation toolkit. 407 database records were screened; eight studies of varied methodological quality met the inclusion criteria. Evaluations frequently used questionnaires to collect mixed-methods data. Higher quality studies had specific evaluation aims, used a wider variety of evaluation methods and had independent evaluation teams. Evaluation sample profiles were often gender-biased and not ethnically representative. Patient involvement in event delivery supported learning and engagement. These findings and recommendations can help improve future evaluations. (Research Registry ID reviewregistry1021).

A living-donor kidney transplant (LDKT) is one of the best treatments for kidney failure. The UK’s LDKT activity falls behind that of many other countries, and there is evidence of socioeconomic inequity in access. We aimed to develop a UK-specific multicomponent intervention to support eligible individuals to access a LDKT. The intervention was designed to support those who are socioeconomically-deprived and currently disadvantaged, by targeting mediators of inequity identified in earlier work. We identified three existing interventions in the literature which target these mediators: a) the Norway model (healthcare practitioners contact patients’ family with information about kidney donation), b) a home education model, and c) a Transplant candidate advocate model. We undertook intervention development using the Person-Based Approach (PBA). We performed in-depth qualitative interviews with people with advanced kidney disease (n = 13), their family members (n = 4), and renal and transplant healthcare practitioners (n = 15), analysed using thematic analysis. We investigated participant views on each proposed intervention component. We drafted intervention resources and revised these in light of comments from qualitative ‘think-aloud’ interviews. Four general themes were identified: i) Perceived cultural and societal norms; ii) Influence of family on decision-making; iii) Resource limitation, and iv) Evidence of effectiveness. For each intervention discussed, we identified three themes: for the Norway model: i) Overcoming communication barriers and assumptions; ii) Request from an official third party, and iii) Risk of coercion; for the home education model: i) Intragroup dynamics; ii) Avoidance of hospital, and iii) Burdens on participants; and for the transplant candidate advocates model: i) Vested interest of advocates; ii) Time commitment, and iii) Risk of misinformation. We used these results to develop a multicomponent intervention which comprises components from existing interventions that have been adapted to increase acceptability and engagement in a UK population. This will be evaluated in a future randomised controlled trial.

Despite growing public interest in death, support for end-of-life care and bereavement remains inadequate. We urgently need a community centred, public health approach to the social processes of dying and grieving, backed by properly funded palliative care, writes Lucy Selman

Background COVID-19 drastically affected healthcare services world-wide. In the UK, many cancer services were overwhelmed as oncology staff were reassigned, and cancer diagnoses and treatments were delayed. The impact of these pressures on end-of-life care for patients with advanced cancer and their relatives is not well understood. Methods Secondary thematic analysis of qualitative survey and interview data, collected from family members and close friends bereaved by cancer, as part of a national COVID-19 bereavement study (Survey N  = 156; Interview N  = 10). Results Four key themes were identified: The impact of COVID-19 on contact with patients towards the end of life; Mixed experiences of support for family members; Variable communication quality from health and social care professionals; Prioritisation of COVID-19 and its impact on patient care. Hospital care was perceived more negatively than community care in almost all areas, while support from cancer charities and district nurses was appreciated the most. Almost all participants felt that COVID-19 was detrimentally prioritised over care for their relative/friend. Conclusions People bereaved by cancer were uniquely affected by pandemic-restrictions and disruptions to services. As services re-build post-pandemic, improvements in palliative care in hospitals, investment into community care, and ensuring compassionate communication with patients and families must be prioritised, alongside preparedness for future pandemics or similar events.

Grief is a natural process, and many people will adjust in time with support from family and friends. However, evidence suggests that around 40% of bereaved people may benefit from additional assistance, including support from bereavement volunteers. Despite the recognition that bereavement care is a public health priority, availability of bereavement support is inconsistent across the UK and internationally. The continuing expansion of online connectivity offers opportunities to develop digital health interventions to help address the needs of grieving individuals. To improve access to bereavement support, we developed an online intervention based on Acceptance and Commitment therapy-based Training (ACT) 'My Grief My Way' and trained volunteers to provide bereavement support in line with ACT-based principles. To describe the views and experiences of bereavement support volunteers who undertook online ACT-based bereavement support training designed to help bereaved individuals cope with grief and improve quality of life. Semi-structured interviews and focus groups were conducted with a convenience sample of bereavement support volunteers from two not-for-profit bereavement services in UK. Analysis was guided by the framework approach via NVivo-14. A total of 17 participants were recruited; age range 33-76 years, female, n = 15 (88%); ethnicity white, n = 17 (100%). Of these, 15 completed ACT-based My Grief My Way training. Nine participants took part in two focus groups (n = 7) or individual interviews (n = 2), Training was perceived positively, with resulting themes and subthemes indicating there was something to suit everyone's learning preferences. Participants described the benefits of incorporating ACT-based principles and strategies as valuable additional tools to current practice, underlining the model's relevance, compatibility and practical application, and was viewed as a good fit irrespective of which therapeutic approach they used with clients. Online ACT-based training and the delivery of ACT-based bereavement support was therefore, perceived as a valuable approach in this context.

ObjectivesOlder people with kidney failure often have a limited range of treatment options, with few being well enough to receive a transplant. Instead, they either start dialysis or have ‘conservative kidney management’ (CKM). CKM involves care that focuses on managing the symptoms of kidney failure and maintaining quality of life in the absence of dialysis. The relative ability of dialysis and CKM to make older people live longer and feel better is uncertain. This study aimed to describe how older patients understand and decide between dialysis and CKM, as evidence suggests they may not be fully supported to make informed decisions between these treatments.DesignQualitative study using semistructured interviews, analysed using inductive thematic analysis and constant comparative techniques.SettingThree UK specialist kidney units.ParticipantsAdults with estimated glomerular filtration rate (eGFR) <15 and aged over 80 years, irrespective of comorbidity or over 65 if living with two additional long-term conditions or frailty. Participants were purposively sampled to maximise clinicodemographic variation, and recruitment was continued until no new major themes were arising in the analysis.ResultsEight men and seven women with a median age of 81 (range 65–90), and a median eGFR of 12 were interviewed. Three themes were identified: (1) ‘Do dialysis or die’, where not having dialysis was equated with death; (2) The ‘need’ for dialysis, where haemodialysis was perceived as the default treatment and (3) Weighing-up quality and quantity of life, relating to the trade-offs made between treatment benefits and burdens. Participants appeared unlikely to recognise the uncertain survival benefits of dialysis.Our study took place in England and all the participants were white British. As culture and faith can play a large part in decisions involving life and death, our findings may not be applicable to those in other communities. Participants were recruited from three centres, limiting the breadth of approaches to kidney failure management.ConclusionsFor older people who face short lives irrespective of treatment for kidney failure, unfamiliarity with treatment options, the desire to live and the ‘do or die’ notion conspire to cast haemodialysis as inevitable, regardless of whether this is the most appropriate treatment. To best enable shared decision-making, clinicians should present kidney failure treatment options in an accurate and balanced way, and respect and support older people who are deciding whether to have CKM or dialysis. This includes articulating uncertainty and supporting patients to make trade-offs in relation to what is important to them.

ObjectivesTo understand why patients with chronic kidney disease (CKD) may not be treated according to international guidelines for myocardial infarction (MI).DesignMulticentre qualitative interview study. Interviews were analysed using reflexive thematic analysis approach as outlined by Braun and Clarke to generate themes associated with MI treatment decision-making for, and by, patients with CKD.SettingFour National Health Service hospital centres in the UK (February 2022 to July 2024).ParticipantsA purposive sample of 46 participants (patients and clinicians). Clinicians (n=32) were senior doctors-in-training or consultants in cardiology, nephrology, acute or emergency care or cardiac surgery. Patient participants (n=14) had CKD, defined as an estimated glomerular filtration rate <60 mL/min/1.73 m2, or receipt of kidney replacement therapy (KRT).ResultsDespite expressing strong views regarding their health priorities, patients reported minimal involvement in treatment decision-making. Decision-making by clinicians was driven by the desire to avoid causing harm to patients by ‘active’ treatment initiation. In general, despite the concept of evidence-based medicine being widely accepted, there remained scepticism of guidelines or epidemiological data, especially in the light of personal adverse experiences or anecdotes. Clinicians described how, in the absence of collaborative decision-making and a clinical safety-net for managing treatment complications, they tended to make conservative treatment decisions for patients with CKD.ConclusionInterventions to foster teamworking between specialists and ensure adequately resourced specialist clinical service safety-nets may improve access to treatments for MI for people with CKD. Intervention development and evaluation should follow to determine if outcomes for people with CKD and MI can be improved.

Background Patients approaching kidney failure are increasingly older, and living with multiple long-term conditions. The benefits of kidney replacement therapy (KRT) are uncertain for many in this group. Supporting decisions between treatment options requires consideration of how people perceive chronic kidney disease and its treatments. This qualitative study aimed to explore how older patients and family members understand kidney function and failure, and how this impacts treatment decision-making. Methods Between September 2018 and July 2019, semi-structured interviews were conducted with older patients and family members recruited from three United Kingdom kidney units. Eligible patients had estimated glomerular filtration rate (eGFR) < 15 ml/min/1.73m 2 , no previous KRT and were age ≥ 80 years, or ≥ 65 years with significant comorbidity. Interviews used a topic guide developed with patient input. Interview transcripts were analysed using inductive thematic analysis and constant comparative techniques. Results Fifteen patients and 12 family members were interviewed. Three themes were identified: (i) Critical blood-cleaning organs, where kidney function was considered vital for survival; (ii) Unwitnessed function and failure, where kidney disease was experienced invisibly; and (iii) Quantifying and predicting kidney function, including conceptualisation of kidney function using numbers and graphs. Unwitnessed, intangible experiences of kidney failure appeared to accentuate reliance on clinicians for disease information. Numerical and graphical depictions of kidney function were central to formation of disease understanding. Concepts of treatment ‘thresholds’ appeared to affirm misperceptions of a binary choice between dialysis and death. Conclusions Unintended misunderstandings, including eGFR thresholds for dialysis initiation, arise from common clinical communication approaches and appear to impact upon informed decision-making. This is especially important for older patients with multiple conditions, for whom the benefits of dialysis are uncertain. Improved consultation approaches which enhance patient understanding are needed. Revising misleading terminology and shifting focus away from numerical disease metrics may help patients and families making individualised choices between treatments. Clinical trial number Not applicable.

People working in healthcare experience grief professionally as well as personally and societally. Attitudinal shifts are needed, argues Lucy Selman, to improve access to formal and informal support and make grief a less lonely experience. Doctors’ openness and willingness to show vulnerability could help