DECIDE (Diverse experiences of End-of-Life Care for Dementia) establishing consensus and capacity for future research through collaboration and co-production.

BACKGROUND: Dementia is a leading cause of death globally. However, end-of-life care is often poor or non-existent. People with dementia from ethnic minorities or socioeconomically deprived communities are even less likely to receive good palliative care. Despite this, research into end-of-life care often fails to include people from these populations. AIM: To find out what research is required to improve end-of-life care for everyone with dementia and how to facilitate inclusivity. METHOD: A scoping review of the academic literature (Medline, CINAHL, EMBASE, PsycInfo and Scopus databases) published between Jan 2000 and April 2023 was conducted. Findings were shared with diverse key stakeholders through a series of workshops. Conclusions were subsequently used to provide evidence-based recommendations for inclusive end-of-life care and future research. RESULTS: Themes from the literature were evident in the personal and professional experiences of key stakeholders. Palliative care providers are often ignorant of the needs of those dying in the margins. Support services are scarce and unequal geographically. There is a lack of personalised and culturally appropriate care for those with dementia and their families. Themes from the stakeholder groups included a need for better communication between services, and more investment into dementia as a palliative condition, with avenues created to increase trust and facilitate engagement with services. CONCLUSION: Future research should focus on educational strategies, including how optimal end-of-life care differs for those with dementia compared to other life-limiting conditions, with appropriate models of inclusive, appropriately funded care needed.

'That's how we got around it': a qualitative exploration of healthcare professionals' experiences of care provision for asylum applicants' with limited English proficiency in UK contingency accommodation.

OBJECTIVES: The inadequate provision of language interpretation for people with limited English proficiency (LEP) is a determinant of poor health, yet interpreters are underused. This research explores the experiences of National Health Service (NHS) staff providing primary care for people seeking asylum, housed in contingency accommodation during COVID-19. This group often have LEP and face multiple additional barriers to healthcare access. Language discrimination is used as a theoretical framework. The potential utility of this concept is explored as a way of understanding and addressing inequities in care. DESIGN: Qualitative research using semistructured interviews and inductive thematic analysis. SETTING: An NHS primary care service for people seeking asylum based in contingency accommodation during COVID-19 housing superdiverse residents speaking a wide spectrum of languages. PARTICIPANTS: Ten staff including doctors, nurses, mental health practitioners, healthcare assistants and students participated in semistructured online interviews. Some staff were redeployed to this work due to the pandemic. RESULTS: All interviewees described patients' LEP as significant. Inadequate provision of interpretation services impacted the staff's ability to provide care and compromised patient safety. Discrimination, such as that based on migration status, was recognised and challenged by staff. However, inequity based on language was not articulated as discrimination. Instead, insufficient and substandard interpretation was accepted as the status quo and workarounds used, such as gesticulating or translation phone apps. The theoretical lens of language discrimination shows how this propagates existing social hierarchies and further disadvantages those with LEP. CONCLUSIONS: This research provides empirical evidence of how the inadequate provision of interpreters forces the hand of healthcare staff to use shortcuts. Although this innovative 'tinkering' allows staff to get the job done, it risks normalising structural gaps in care provision for people with LEP. Policy-makers must rethink their approach to interpretation provision which prioritises costs over quality. We assert that the concept of language discrimination is a valuable framework for clinicians to better identify and articulate unfair treatment on the grounds of LEP.

Beyond the biomedical: an evaluation of the introduction of social gerontology into a postgraduate geriatric medicine education program.

Geriatric Medicine education tends to adopt a biomedical lens, despite the practice of Geriatric Medicine involving the comprehensive assessment of the functional, psychological, and social aspects of older people's lives. In this commentary, we describe the delivery of a Social Gerontology education program for Geriatric Medicine trainees in the Northwest of England. Education in Social Gerontology-a field that focuses on how social, cultural, economic, and environmental factors shape the lives of older adults-is thought to mitigate against ageism, a pervasive and multifaceted form of discrimination. We describe the rationale for, and context of, the program delivery, before presenting an overview of trainee's feedback. Thematic analysis of feedback centered around three main themes: knowledge acquisition, change in clinical practice, and enjoyment of the sessions. Trainees (n = 20) reported enjoying the sessions, with 100% likely to recommend to peers. The focus on underserved groups, the novel content of the sessions, which were not taught elsewhere, and the non-medical perspective of the speakers were described as particularly valuable. By sharing our approach and reflecting on the early success of the program, we argue for an increased focus on Social Gerontology in Geriatric Medicine education.

Unrepresented, unheard and discriminated against: A qualitative exploration of relatives' and professionals' views of palliative care experiences of people of African and Caribbean descent during the COVID-19 pandemic.

BACKGROUND: People of African and Caribbean descent experienced disproportionately high mortality from COVID-19 and have poor access to palliative care. AIM: To explore palliative care experiences of people of African and Caribbean descent during and immediately prior to the pandemic. DESIGN: Qualitative interview study with thematic analysis. Refinement of themes/recommendations in consultation with an expert patient and public advisory group. SETTING/PARTICIPANTS: Twenty-six bereaved relatives and 13 health/social care professionals (cared for people of African and Caribbean descent) from throughout England, recruited using social media, community networks and direct advertising to over 150 organisations. RESULTS: Three themes were identified: Representation: Participants did not see themselves reflected in the palliative care services and did not expect their needs to be understood. Mistrust of the healthcare system and perceptions of racism were common and led to anticipation of inequitable care. Personalisation: Relatives and professionals reported a lack of cultural and religious sensitivity in healthcare. Assumptions were made based on ethnicity, and services not offered to all. Awareness and education: Professionals felt they lacked the knowledge to provide care to diverse communities, but were reluctant to ask, due to fear of making mistakes. Inequitable access to services was exacerbated by, but not unique to, the pandemic. Participants recommended raising awareness of palliative services, building professional competence in culturally-sensitive care, and greater ethnic diversity within services. CONCLUSIONS: Person-centred, culturally-competent palliative care is not the norm for people of African and Caribbean descent. Expectations of inequitable care are widespread. Sustained action on multiple fronts is needed.

'That's as hard a decision as you will ever have to make': the experiences of people who discussed Do Not Attempt Cardiopulmonary Resuscitation on behalf of a relative during the COVID-19 pandemic.

BACKGROUND: COVID-19 brought additional challenges to Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision-making, which was already a contentious issue. In the UK, reports of poor DNACPR decision-making and communication emerged in 2020, including from the regulator, the Care Quality Commission. This paper explores the experiences of people who discussed DNACPR with a healthcare professional on behalf of a relative during the coronavirus pandemic, with the aim of identifying areas of good practice and what needs to be improved. METHODS: a total of 39 people participated in semi-structured interviews via video conferencing software or telephone. Data were evaluated using Framework Analysis. FINDINGS: results are presented around three main themes: understanding, communication and impact. Participants' understanding about DNACPR was important, as those with better understanding tended to reflect more positively on their discussions with clinicians. The role of relatives in the decision-making process was a frequent source of misunderstanding. Healthcare professionals' communication skills were important. Where discussions went well, relatives were given clear explanations and the opportunity to ask questions. However many relatives felt that conversations were rushed. DNACPR discussions can have a lasting impact-relatives reported them to be significant moments in care journeys. Many relatives perceived that they were asked to decide whether their relative should receive CPR and described enduring emotional consequences, including guilt. CONCLUSION: the pandemic has illuminated deficiencies in current practice around DNACPR discussion, which can have difficult to anticipate and lasting negative consequences for relatives. This research raises questions about the current approach to DNACPR decision-making.

In critique of moral resilience: UK healthcare professionals' experiences working with asylum applicants housed in contingency accommodation during the COVID-19 pandemic.

This research explores the experiences of UK NHS healthcare professionals working with asylum applicants housed in contingency accommodation during the COVID-19 pandemic. Using a critical understanding of the concept of moral resilience as a theoretical framework, we explore how the difficult circumstances in which they worked were navigated, and the extent to which moral suffering led to moral transformation. Ten staff from a general practice participated in semistructured interviews. Encountering the harms endured by people seeking asylum prior to arrival in the UK and through the UK's 'Hostile Environment' caused healthcare staff moral suffering. They responded to this in several ways, including: (1) feeling grateful for their own fortunes; (2) defining the limitations of their professional obligations; (3) focusing on the rewards of work and (4) going above and beyond usual care. Although moral resilience is reflected in much of the data, some participants described how the work caused ideological transformations and motivated challenges to systems of oppression. We show how current moral resilience theory fails to capture these transformative political and social responses, warning of how, instead, it might encourage healthcare staff to maintain the status quo. We caution against the widespread endorsement of current formulations of moral resilience in contemporary social and political climates, where the hostile and austere systems causing suffering are the result of ideological political decisions. Future work should instead focus on enabling working conditions to support, and developing theory to capture, collective resistance.

The value of qualitative data in Quality Improvement Projects in the care of older adults: the case of frailty scores in the emergency department.

This commentary discusses the role and value of qualitative data when undertaking quality improvement (QI) focussing on the care of older adults. To illustrate this, we reflect on our own experiences of planning a QI project to improve the documentation of Clinical Frailty Scale (CFS) scores in the emergency department (ED) during the coronavirus disease of 2019 (COVID-19) pandemic. National clinical guidance for COVID-19 states that all adults over the age of 65 should be given a CFS at the first point of contact during hospital admission. Therefore, there is a need to improve CFS documentation, specifically in acute care settings. We describe how qualitative methods facilitated an understanding of the barriers to CFS documentation in ED. Staff see the CFS as a useful tool for inter-professional communication, though there are tensions between clinical guidance and their beliefs. Staff had moral concerns about how an ED-allocated CFS might limit available treatment options for older adults. Our findings demonstrate how qualitative methods can illuminate the important social and moral dimensions of why improvement does or does not occur.

Health and hostile hospitality: Understanding asylum applicants' narratives of life and health in the UK.

This paper explores how middle aged and older asylum applicants in the UK speak about health in relation to migratory experiences. It proposes biocredibility as a novel theoretical concept, through which the narratives of those migrating to the UK to seek asylum can be analysed. The UK government's hostile environments policies, which aim to make life uncomfortable for irregular migrants in the UK in order to drive down migration, have been criticised on legal, material and moral grounds. This paper adds to this critique. Narrative analysis of semi-structured interviews shows that the majority of the asylum applicants interviewed felt their health was poor and told of the difficulties of life in the UK. Stories of homelessness, poverty and exclusion dominated, underpinned by the erosion of their perceived trustworthiness and credibility through encounters with the Home Office. Particular personal experiences of social, political and economic strife in exile were narrated closely against stories of illness. The concept of biocredibility refers to, and provides a way of understanding, participants' propensity for creating narrative enclaves for pathographies as a discursive mechanism to add credibility to narratives of lived experience. In this way, visceral descriptions of biological suffering can function as a narrative resource. It does this firstly by providing material and social context for adverse health, thus allowing participants to attribute a socio-political cause for their illness. Secondly it interjects experiences of illness into life narratives, thus effectively communicating the significance of such experiences. Finally, it provides narrative evidence of individuals' autobiographical testimony. For discredited and marginalised asylum applicants, biocredibility can be understood to represent a strategy used to re-negotiate credibility and urges a critical consideration of the hostile and austere socio-political context in which it is observed.

Healthcare access for asylum seekers and refugees in England: a mixed methods study exploring service users' and health care professionals' awareness.

BACKGROUND: With the aim of decreasing immigration, the British government extended charging for healthcare in England for certain migrants in 2017. There is concern these policies amplify the barriers to healthcare already faced by asylum seekers and refugees (ASRs). Awareness has been shown to be fundamental to access. This article jointly explores (i) health care professionals' (HCPs) awareness of migrants' eligibility for healthcare, and (ii) ASRs' awareness of health services. METHODS: Mixed methods were used. Quantitative survey data explored HCPs' awareness of migrants' eligibility to healthcare after the extension of charging regulations. Qualitative data from semi-structured interviews with ASRs were analyzed thematically using Saurman's domains of awareness as a framework. RESULTS: In total 514 HCPs responded to the survey. Significant gaps in HCPs' awareness of definitions, entitlements and charging regulations were identified. 80% of HCP respondents were not confident defining the immigration categories upon which eligibility for care rests. Only a small minority (6%) reported both awareness and understanding of the charging regulations. In parallel, the 18 ASRs interviewed had poor awareness of their eligibility for free National Health Service care and suitability for particular services. This was compounded by language difficulties, social isolation, frequent asylum dispersal accommodation moves, and poverty. CONCLUSION: This study identifies significant confusion amongst both HCP and ASR concerning eligibility and healthcare access. The consequent negative impact on health is concerning given the contemporary political climate, where eligibility for healthcare depends on immigration status.

Access to primary health care for asylum seekers and refugees: a qualitative study of service user experiences in the UK.

BACKGROUND: Asylum seekers and refugees (ASR) face difficulty accessing health care in host countries. In 2017, NHS charges for overseas visitors were extended to include some community care for refused asylum seekers. There is growing concern that this will increase access difficulties, but no recent research has documented the lived experiences of ASR accessing UK primary health care. AIM: To examine ASR experiences accessing primary health care in the UK in 2018. DESIGN AND SETTING: This was a qualitative community-based study. ASR were recruited by criterion-based sampling through voluntary community organisations. METHOD: A total of 18 ASR completed face-to-face semi-structured recorded interviews discussing primary care access. Transcripts underwent thematic analysis by three researchers using Penchansky and Thomas's modified theory of access. RESULTS: The qualitative data show that participants found primary care services difficult to navigate and negotiate. Dominant themes included language barriers and inadequate interpretation services; lack of awareness of the structure and function of the NHS; difficulty meeting the costs of dental care, prescription fees, and transport to appointments; and the perception of discrimination relating to race, religion, and immigration status. CONCLUSION: By centralising the voices of ASR and illustrating the negative consequences of poor healthcare access, this article urges consideration of how access to primary care in the UK can be enhanced for often marginalised individuals with complex needs.