Risk factors associated with poorer experiences of end-of-life care and challenges in early bereavement: Results of a national online survey of people bereaved during the COVID-19 pandemic.

Background: Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood.

Aim: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support.

Design: Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations.

Patient and public involvement in randomised clinical trials: a mixed-methods study of a clinical trials unit to identify good practice, barriers and facilitators.

Background: While patient and public involvement (PPI) in clinical trials is beneficial and mandated by some funders, formal guidance on how to implement PPI is limited and challenges have been reported. We aimed to investigate how PPI is approached within a UK Clinical Trials Unit (CTU)'s portfolio of randomised controlled trials, perceived barriers to/facilitators of its successful implementation, and perspectives on the CTU's role in PPI.

Methods: A mixed-methods study design, involving (1) an online survey of 26 trial managers (TMs) and (2) Interviews with Trial Management Group members and public contributors from 8 case-study trials.

Defining ethical challenge(s) in healthcare research: a rapid review.

Background: Despite its ubiquity in academic research, the phrase 'ethical challenge(s)' appears to lack an agreed definition. A lack of a definition risks introducing confusion or avoidable bias. Conceptual clarity is a key component of research, both theoretical and empirical.

Real-world ethics in palliative care: A systematic review of the ethical challenges reported by specialist palliative care practitioners in their clinical practice.

Background: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff.

Emotional labour in palliative and end-of-life care communication: A qualitative study with generalist palliative care providers.

Objective: To explore generalist palliative care providers' experiences of emotional labour when undertaking conversations around palliative and end-of-life care with patients and families, to inform supportive strategies.

Methods: Semi-structured interviews conducted with generalist staff (those providing 'primary' or 'general' palliative care, not palliative care specialists) who had attended a communication workshop. Sampling was purposive (by gender, profession, experience).

The views and experiences of older people with conservatively managed renal failure: a qualitative study of communication, information and decision-making.

Background: Older people with advanced kidney disease require information and support from clinicians when deciding whether to have dialysis or conservative (non-dialysis) care. There is evidence that communication practices, information provision and treatment rates vary widely across renal units. However, experiences of communicating with clinicians among patients receiving conservative care are poorly understood.

Cultural Factors Influencing Advance Care Planning in Progressive, Incurable Disease: A Systematic Review With Narrative Synthesis.

Context: Advance care planning (ACP) can improve end-of-life outcomes, but low uptake indicates it is less acceptable to patients of some cultural backgrounds.

Objectives: The objectives of this study were to explore how cultural factors influence ACP for patients with progressive, incurable disease and how ACP might be made cross-culturally appropriate.

Method: We conducted a systematic literature review using narrative synthesis.

Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: A systematic review using critical interpretive synthesis.

Background: Patient empowerment, defined as 'a process through which people gain greater control over decisions and actions affecting their health' (World Health Organization) is a key theme within global health and social care strategies. The benefits of incorporating empowerment strategies in care are well documented, but little is known about their application or impact for patients with advanced, life-limiting illness(s).

Aim: To identify and synthesise the international evidence on patient empowerment for adults with advanced, life-limiting illness(s).

Active ingredients of a person-centred intervention for people on HIV treatment: analysis of mixed methods trial data.

Background: A new model of care is required to meet the changing needs of people living with HIV (PLWH), particularly in low and middle-income countries, where prevalence is highest. We evaluated a palliative care intervention for PLWH in Mombasa, Kenya. Although we found no effect on pain (primary outcome), there was a positive effect on mental health (secondary outcome) in the intervention group.

'Difficult Conversations': evaluation of multiprofessional training.

Objectives: Evidence-based communication skills training for health and social care professionals is essential to improve the care of seriously ill patients and their families. We aimed to evaluate the self-reported impact of 'Difficult Conversations', a multidisciplinary half-day interactive workshop, and gain feedback to inform future development and evaluation.

Methods: Service evaluation using questionnaire data collected before and immediately after workshops from February 2015 to August 2016 regarding participant self-assessed confidence, knowledge and skills.

Patients' and caregivers' needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries.

Background: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.

Aim: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.

A Systematic Review of End-of-Life Care Communication Skills Training for Generalist Palliative Care Providers: Research Quality and Reporting Guidance.

Context: End-of-life care (EoLC) communication skills training for generalist palliative care providers is recommended in policy guidance globally. Although many training programs now exist, there has been no comprehensive evidence synthesis to inform future training delivery and evaluation.

Objectives: To identify and appraise how EoLC communication skills training interventions for generalist palliative care providers are developed, delivered, evaluated, and reported.

The Effect of Communication Skills Training for Generalist Palliative Care Providers on Patient-Reported Outcomes and Clinician Behaviors: A Systematic Review and Meta-analysis.

Context: As most end-of-life care is provided by health care providers who are generalists rather than specialists in palliative care, effective communication skills training for generalists is essential.

Objectives: To determine the effect of communication training interventions for generalist palliative care providers on patient-reported outcomes and trainee behaviors.

Methods: Systematic review from searches of 10 databases to December 2015 (MEDLINE, EMBASE, PsycINFO, ERIC, CINAHL, CENTRAL, Web of Science, ICTRP, CORDIS, and OpenGrey) plus hand searching.

'You are labelled by your children's disability' - A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom.

Objectives: Social stigma is commonly experienced by parents of children with autism. Our aim was to understand the nature of stigma experienced by Somali parents of children with autism in the United Kingdom (UK), and to consider how they coped with or resisted such stigma.

Design: We used a community-based participatory research approach, collaborating with a community organisation of Somali parents.

Primary care physicians' educational needs and learning preferences in end of life care: A focus group study in the UK.

Background: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education.

'End of life could be on any ward really': A qualitative study of hospital volunteers' end-of-life care training needs and learning preferences.

Background: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals.

How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA.

Background: patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care.

Objective: we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care.

How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data.

Background: Uncertainty is common in advanced illness but is infrequently studied in this context. If poorly addressed, uncertainty can lead to adverse patient outcomes.

Aim: We aimed to understand patient experiences of uncertainty in advanced illness and develop a typology of patients' responses and preferences to inform practice.