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This article explores how solicited paper diaries, and the accompanying materials, are carefully handled over the course of one research project. It foregrounds the value of attending to mundane moments with research materials, by tracing tangible material encounters together with intimate fieldnote reflections. Through drawing upon theories of materiality with feminist and relational ethics of care, this article centralises paper diaries as a key mediator of relationships and care within research. It considers the micro processes of choosing diaries, posting them, receiving and storing them and tracing the emotionally charged moments as a researcher in everyday research situations. Such reflections, from the perspective of the researcher, look to offer insights into research relationalities and care. It argues that these momentary fieldwork reflections extend understandings of material methodologies by emphasising relational intimacies as a researcher and connects material and sensory understandings with feminist ethics of care and researcher reciprocities. [ABSTRACT FROM AUTHOR]

This paper argues that trust cannot be taken for granted in long-term participatory research and promotes greater consideration to conceptualizing the trusting process as fluid and fragile. This awareness by researchers can reveal to them how the passing of time shapes and reshapes the nature of trusting relationships and their constant negotiation and re-negotiation. The paper draws together literature from different disciplines on the themes of trust, temporality and participatory research and outcomes from interviews and workshops undertaken for The Trust Map project to focus on two key moments that reveal the fragility of trust. These are the subtlety of disruption and trust on trial and trust at a distance. We discuss how trust was built over time through processes of interaction that were continually tested, incremental and participatory. [ABSTRACT FROM AUTHOR]

Despite increasing scholarly and media attention on sexual violence in public spaces, including those associated with the night-time economy and licensed venues, music festivals have been largely absent from research and policy. This paper presents the findings from the first UK study of sexual violence at music festivals, drawing on data from interviews with 13 women who have experienced some form of sexual harassment or assault at a festival. Analysis reveals that sexual violence at festivals occurs on a continuum and represents an extension of rape culture through which sexual violence is culturally condoned and normalized, enabled through a number of environmental and culture features that are unique to festivals. [ABSTRACT FROM AUTHOR]

Performance management systems are intended to positively influence employee behaviour but do they also motivate significant gaming? This concern is increasingly noted in the literature yet research into gaming and how it arises has been very limited. Using data collected from 65 semi-structured interviews with academics working in 13 research intensive business schools/schools of management in the United Kingdom, this article demonstrates how performance management systems can encourage employees to engage in a range of behaviours termed gaming in order to navigate performance management systems. It categorises gaming behaviours into five types: gratuitous proliferation, hoarding performance, collusive alliances, playing safe and cooking the books. The article then examines the distinctive features of each type and illustrates how it arises as a response to performance management systems. Given the widespread use of performance management systems and the close similarities in the way they are implemented in different public and private sector organisations, the derived categories are relevant to contexts beyond the university setting. [ABSTRACT FROM AUTHOR]

Introduction: This paper draws on a study and its findings that set out to explore why some students appear to thrive, turning placement experiences into positive empowering opportunities despite the challenges, where others may not. Findings established a broader application beyond placements to inform curriculum design and delivery that nurtures professionalism, competence and identity from pre-admission to transition into practice as a journey of growth and development. Method: A mixed-methods approach was adopted. Questionnaires and interviews gathered data from two cohorts in traditional (n = 25) or role-emerging placements (n = 13). An interpretive approach was employed for the qualitative data. The quantitative data underwent statistical analysis. Findings: Students in role-emerging placements scored higher in resilience prior to and developed greater resilience as a consequence. These students scored higher in traits of openness, conscientiousness, extraversion and agreeableness and were more emotionally stable compared with students in traditional placements. Agreeableness was positively correlated with greater resilience in these students. Conclusion: Curricula design and delivery should embed opportunities throughout programmes of study enabling students to nurture an openness to new experiences, with positive risk taking, building an ability to thrive. Understanding individual differences in students informs the development of competence and identity pivotal for transition into practice. [ABSTRACT FROM AUTHOR]

Many people living with dementia are 'on the margins', not accessing services and support, despite policy and care advancements. The COVID-19 pandemic exacerbated this, with the closure of face-to-face support during lockdowns in the UK and globally. The aim of the 'Beyond the Margins' project was to develop, implement, and evaluate a face-face programme of support with, by and for people with direct experience of dementia who are on the margins of existing services and support. In March 2020 the project was interrupted by the outbreak of the COVID-19 pandemic and it changed to an online format. The three-phase participatory action research project included 40 people living with dementia, 26 care partners and 31 health and social care practitioners. A seven-week online personal development programme called Getting On with Life (GO) was developed, delivered, and evaluated. This paper focuses on the participatory approaches used to develop and implement the GO programme, and the resulting aspects of its approach to facilitation and content. Key features include the GO Programme's principles of providing a safe and a respectful space, and the programme's values of: Everyone who comes already knows things, can learn things and can teach things; Doing things 'with' each other, rather than 'for' or 'to' each other; Personalised goals—led by the needs of participants rather than an imposed agenda. A key finding was the importance of developing post-diagnostic programmes as a 'sandwich', providing a safe space for learning that is preceded by understanding pathways to access the programme and followed by explicit consideration of the next steps in increasing social engagement. [ABSTRACT FROM AUTHOR]

The Psychology of Women and Equalities Section (POWES) of the British Psychological Society (BPS) accounts for much of the feminist action in British psychology and beyond. In this qualitative study, we use discursively informed thematic analysis to examine a set of eleven in-depth interviews to explore the everyday experiences of feminists within academic spaces in and around the discipline of psychology in the United Kingdom. Three research questions addressing the boundary between activism and academia; the provision of support; and differing approaches to knowledge production were investigated. Our findings highlight the role of POWES as a feminist community as well as the conceptual importance of notions of home, work, and fun. Moreover, the paper examines the ways traditional conceptions of scientific rigour continue to haunt feminist spaces, as does the invisibility of emotional labour. Overall, our findings indicate that the place of feminist academic communities remains vital to sustain critical thought and action: having an intellectual "home" is pivotal to the survival of feminist psychology as well as feminists in psychology. [ABSTRACT FROM AUTHOR]

This paper describes two case studies of arts interventions in UK care settings. Visual arts and dance movement interventions were regularly held in two settings. This paper draws on data from qualitative interviews, reflective diary sheets and narrative monitoring reports to examine the content, context, and process of the arts interventions within the care settings. Activity coordinators play a crucial role in the success of arts interventions in care setting through their knowledge and support of residents. We recommend that preparatory consultations should take place between arts practitioners and care personnel, as this seems to improve participation and overall satisfaction. [ABSTRACT FROM AUTHOR]

The identity of stepmother is, in many ways, a troubled one – constructed as "other" and often associated with notions of "wickedness" in literature and everyday talk. This paper reports findings from a study on the difficulties faced by stepmothers and how they use talk about their (male) partners, often constructing men as hapless, helpless or hopeless, to repair their "troubled" identities. The data were collected from a web forum for stepmothers based in the UK and 13 semi-structured face-to-face interviews with stepmothers. The analysis took a synthetic narrative-discursive methodological approach, underpinned by feminist theory with particular attention to the discourses that were drawn on by participants and the constraints that these imposed. This paper presents these findings in relation to three constructions of their partners through which repair work was attempted: men as in need of rescue ; men as flawed fathers ; and men as damaged. The paper concludes with some suggestions for supporting stepmothers by challenging dominant narratives around families in talk, in the media and in government and institutional policies. [ABSTRACT FROM AUTHOR]

Background: Access to affordable, appropriate housing is one of the key social determinants of health, affecting well-being across the lifecourse. However, beyond a recognition that housing quality is linked to place of death, little is known about the ways in which housing status impacts social, emotional, and practical aspects of dying and bereavement. Method: The Checking Out project is a qualitative study aiming to explore the ways in which socio-economic status impacts people's experiences of, and attitudes towards, death, dying, and bereavement in the United Kingdom. Qualitative interviews were carried out with 14 bereaved individuals with experience of poverty at end of life or in bereavement, and 15 professionals supporting individuals in low-income communities. Interviews were conducted via phone/video call, and data include experiences of end of life and bereavement both before and during the pandemic. Transcripts were examined using thematic analysis. Results: Housing emerged as an important factor affecting people's experiences, with 7 of the 14 bereaved individuals and all except 1 of the professionals discussing housing-related issues. Participants described ways in which unsuitable housing and housing insecurity impacted practical aspects of dying but also emotional and social well-being at end of life. Housing-related issues affected both patients and their families, though families found it difficult to air these concerns when their relative was dying. Conclusion: The paper demonstrates how trusted professionals are able to advocate or address the issues faced by bereaved individuals and suggests implications for policy and practice. A greater awareness of the potential impact of housing status across public services, including healthcare practitioners, welfare support, and housing providers, could better support patients and practitioners to address these issues proactively. Housing providers and policy-makers should be included as key partners in collaborative public health approaches to palliative care. [ABSTRACT FROM AUTHOR]

Summary: This paper reports the experiences of adults in receipt of social care when relocating to new local authorities, and of family carers. While many matters need to be considered when moving, the study focused specifically on the 'portability' of social care. The study draws on data from semi-structured interviews conducted between July and November 2013 with 12 adults who had relocated between English local authorities. Data were collected prior to the implementation of the Care Act 2014; the potential impact of the Act in respect of relocation is considered. Findings: Although some positive experiences were identified, participants primarily reported challenges when moving with social care support. Five themes were identified, these related to the amount of organisation, planning and activity required; the need for a timely approach and the risk of delays and interruptions to care delivery; differences between the practices of local authorities; a lack of control and involvement; a negative impact on emotional and physical well-being. As a result of such difficulties, some experienced delays or interruptions to their care and support; lost all or some of their care package; experienced stress, anxiety and worry. Applications: The paper documents the experiences of people relocating with social care support, which have been little explored to date within the UK or internationally, and contributes to the evidence base in respect of relocation and portability of care. It highlights the importance of smooth transitions for those relocating between local authorities, and the potential for social workers to assist by addressing potential problems. [ABSTRACT FROM AUTHOR]

This article explores 'diary-keeping behaviour', or the ways in which participants conduct the completion and submission of diaries in diary research. There is a paucity of methodologically oriented literature on diary method and as such this article makes a contribution to extending the existing knowledge of this method. The primary aim of this article is to set out in detail the key issues relating to diary-keeping behaviour, in order to provide a foundation for future critical explorations of this facet of diary research. The research that this paper is based on involved a 12-month diary-interview study. This project explored the employability management of Chinese international Master's students in social sciences studying in the UK during one academic year. The article sets out key facets of diary-keeping behaviour and explores specific considerations for diary studies in higher education contexts, where diary research has been particularly neglected. [ABSTRACT FROM AUTHOR]

Introduction: Successful adoption of POCTs (Point-of-Care tests) for COVID-19 in care homes requires the identification of ideal use cases and a full understanding of the contextual and usability factors that affect test results and minimise biosafety risks. This paper presents a scoping-usability and test performance study of a microfluidic immunofluorescence assay for COVID-19 in care homes. Methods: A mixed-methods evaluation was conducted in four UK care homes to scope usability and to assess the agreement with qRT-PCR. A dry run with luminescent dye was conducted to explore biosafety issues. Results: The agreement analysis was conducted on 227 asymptomatic participants (159 staff and 68 residents) and 14 symptomatic participants (5 staff and 9 residents). Asymptomatic specimens showed 50% (95% CI:1.3%−98.7%) positive agreement and 96% (95% CI: 92.5%−98.1%) negative agreement with overall prevalence and bias-adjusted Kappa (PABAK) of 0.911 (95% CI: 0.857−0.965). Symptomatic specimens showed 83.3% (95% CI: 35.9%−99.6%) positive agreement and 100% (95% CI: 63.1%−100%) negative agreement with overall prevalence and bias-adjusted Kappa (PABAK) of 0.857 (95% CI: 0.549−1). The dry run highlighted four main sources of contamination that led to the modification of the standard operating procedures. Simulation post-modification showed no further evidence of contamination. Conclusion: Careful consideration of biosafety issues and contextual factors associated with care home are mandatory for safe use the POCT. Whilst POCT may have some utility for ruling out COVID-19, further diagnostic accuracy evaluations are needed to promote effective adoption. [ABSTRACT FROM AUTHOR]

Introduction: In response to growing demands on health and social care services there is an emphasis on communities addressing the needs of local populations to improve lives and reduce inequalities. Occupational therapists are responding to these demands by expanding their scope of practice into innovative settings, such as working with refugees, the homeless and residents of nursing homes, and within sport and leisure environments. The benefits of sport are widely acknowledged, and this paper argues that occupational therapists could play a pivotal role in enabling people to participate. Method: This qualitative study drew on a phenomenological approach and used interviews and thematic analysis to explore five occupational therapists' experiences of enabling people to participate in sport. Findings: Findings revealed that participants demonstrated the uniqueness of occupational therapy when enabling people to participate in sport and practised according to their professional philosophy. There were opportunities to reach wider communities and promote the value of occupational therapy by collaborating with organisations, but there were also challenges when working outside of traditional settings. Conclusion: The study emphasises the unique skills occupational therapists can bring to this setting. It highlights opportunities to expand their practice, to forge new partnerships in sports and leisure environments, and to address the national inactivity crisis. [ABSTRACT FROM AUTHOR]

Background and aims: Autistic children can experience challenges in making and maintaining friendships, and middle childhood (ages 6–12) may be particularly challenging as social networks become more complex. However, a large proportion of research into these experiences is based on adult reports or focuses on the experiences of adolescents, meaning that the voices of younger children are absent. Due to the exclusion of younger children from research, we have a limited understanding of their first-hand experiences of their friendships and the support they receive, which has implications for friendship support and wellbeing. This study aimed to amplify the voices of younger autistic children to explore their first-hand experiences of friendships and highlight areas of social support which may be most beneficial to primary-aged autistic children. Methods: This study used novel creative methods to support interviews with 19 autistic primary school-aged children to explore their experiences of friendship. Parent-led interviews and scrapbooks supported the children in discussing the challenges and strengths of their friendships. Results: Children discussed the challenges and strengths of their friendships including the impact of social norms on the need to have friends and their support needs in this area of life. Children also discussed gaps in their current friendships and how they would like to see these filled. It was clear that not all children required or wanted neurotypical-style friendships, with many valuing companionship and gameplay over intimacy. Analysis highlighted the heterogeneity of autistic children's friendships, especially in relation to gender and age, calling for more tailored and individualized support. Conclusion and implications: Results from the current study show that autistic children can and do have successful friendships but that these friendships may differ from those of their non-autistic peers. The study further adds to the existing literature by showing that younger autistic children can be included in research by using differentiated, accessible and creative methods, and that they are able to voice their opinions on matters surrounding support. It also calls for a tailored approach to supporting autistic children in school and speaking with children to give them autonomy over the support they want to receive. [ABSTRACT FROM AUTHOR]

It is well-established within the hate studies literature that the majority of hate crimes and incidents of targeted hostility are perpetrated by those in the "majority" society. In the UK, academic and official research consistently shows that young White, British males are most commonly the culprits of all forms of targeted victimization, especially racist hate. However, urban areas of "super-diversity" offer researchers an opportunity to understand hate crime victimization and perpetration in a more nuanced and comprehensive way. Hate studies research has slowly begun to highlight instances of people from marginalized and stigmatized groups being targeted on the basis of their identity by individuals who are also members of minority groups, sometimes even the same minority group as the victim. Very little is understood about this particular victimizing dynamic other than it appears to be an attempt by minority group members to "fit in" by adopting what they perceive to be majority group values and attitudes. By drawing from 44 qualitative in-depth interviews exploring the experiences of new migrants and refugees and observations from 20 months of grassroots engagement, this article challenges established theories of "othering" that overwhelmingly refer to binary, static majority/minority tensions. The stories of these too-often "hidden" victims of targeted hostility offer a fresh perspective on the relationships between victims of hate and perpetrators. The article also contributes new explanations as to why those who are often targeted go on to target others. [ABSTRACT FROM AUTHOR]

This article asks how well new developments in family life are reflected in law and policy, with a particular focus on donor conception. There has been an unprecedented 'opening up' of family life in recent decades; this increased diversity is, at least in part, linked to developments in reproductive technologies, including gamete donation. In family lives touched by donation, genetic relations with 'donor connections' take genetic connectedness beyond traditional notions of kinship. There is not yet an established social script for how to understand what constitutes meaningful connectedness in reproductive donation. Focussing on the UK context specifically, where assisted conception is highly regulated, this article examines on the one hand, how UK law and policy portray meaningful connectedness in the context of donation, and, on the other hand, how well this fits with connectedness as experienced within egg and sperm donor communities. Drawing on original data from UK law and policy analysis, and empirical interview data with egg and sperm donors and their kin, our analysis shows important disparities between law and policy, and the empirical evidence, suggesting a need for an overhaul of UK donor conception law and policy. [ABSTRACT FROM AUTHOR]

Many people living with dementia have difficulties at mealtimes, which can result in serious complications for physical and mental health, leading to hospital admissions and even death. However, current training in mealtime care for staff working with this population has been found to be poorly reported, with variable effectiveness. It is essential that care home staff are able to provide good care at mealtimes. This study used ethnography to explore current practice in mealtime care for this population, identify good practice, and understand the factors influencing mealtime care. Approximately 28 h of mealtime observations were conducted in two UK care homes with diverse characteristics. Observations focused on interactions between care staff and residents living with dementia. Twenty-five semi-structured interviews were carried out with care home staff, family carers, and visiting health and social care professionals, to explore mealtime care from their perspectives. A constant comparative approach was taken, to probe emergent findings and explore topics in greater depth. Key thematic categories were identified, including: tensions in mealtime care; the symbolic nature of mealtime care; navigating tensions via a person-centred approach; contextual constraints on mealtime care; and teamwork in mealtime care. The findings indicated that a person-centred approach helps carers to find the right balance between apparently competing priorities, and teamwork is instrumental in overcoming contextual constraints. This evidence has contributed to development of a training intervention for care home staff. Future research should investigate the feasibility of mealtime care training in care homes. [ABSTRACT FROM AUTHOR]

Autistic people diagnosed in adulthood often report that the experience can be life-changing, but there are issues with the diagnostic pathway. Few studies consider the views of people currently seeking diagnosis or contextualise the experience of diagnosis around developing an autistic identity. In this qualitative participatory study, we explored experiences of navigating an autism diagnosis in adulthood in the UK. We recruited six women (aged 21–46 years) who were seeking diagnosis, who worked with the academic researchers across four sessions to develop the study, share their experiences and analyse the themes. In one session, they completed a semi-structured interview alongside photovoice, a community-based action method, to explain and reflect on their experiences. We used reflexive thematic analysis to identify patterns, with four key themes identified: (1) 'everything shattered', (2) 'being seen', (3) 'understanding not judgement, please' and (4) 'here's a leaflet, off you go'. The themes reflected a desire for change and improved support for both diagnosis and developing autistic identity. Following photovoice methodology, together we identified actions to improve adult diagnosis, including involving autistic people in making improvements to the diagnostic criteria, for key professional and community groups to listen more to autistic people and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality. Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone's identity and neurodivergence. [ABSTRACT FROM AUTHOR]

Background: The United Kingdom has the highest incarceration rate in Western Europe. It is known that women in prison are a vulnerable female population who are at risk of mental ill-health due to disadvantaged and chaotic life experiences. Accurate numbers of pregnant women held in UK prisons are not recorded, yet it is estimated that 6%–7% of the female prison population are at varying stages of pregnancy and around 100 babies are born to incarcerated women each year. There are limited published papers that document the departure of the researcher following closure of fieldwork with women in prison. This article identifies the dilemmas and challenges associated with the closure of prison fieldwork through the interwoven reflections of the researcher. Departure scenarios are presented which illuminate moments of closure talk with five women, supported by participant reflections regarding abandonment and loss, making pledges for the future, self-affirmation, incidental add-ons at the end of an interview and red flags, alerting the researcher to potential participant harm through ill health or self-injury. Objectives: The primary intention of the study was to observe the pregnant woman's experience with the English prison system through interviews with pregnant women and field observations of the environment. Research design: Ethnographic design enabled the researcher, a practising midwife, to engage with the prisoners' pregnancy experiences in three English prisons, which took place over 10 months during 2015–2016. Data collection involved semi-structured, audio-recorded interviews with 28 female prisoners in England who were pregnant or had recently given birth while imprisoned, 10 members of staff and a period of non-participant observation. Follow-up interviews with 5 women were undertaken as their pregnancies progressed. Computerised qualitative data analysis software was used to generate and analyse pregnancy-related themes. Ethical considerations: Favourable ethical opinion was granted by National Offender Management Services through the Health Research Authority Integrated Research Application System and permission to proceed was granted by the University of Hertfordshire, UK. Findings: Thematic analysis enabled the identification of themes associated with the experience of prison pregnancy illuminating how prison life continues with little consideration for their unique physical needs, coping tactics adopted and the way women negotiate entitlements. On researcher departure from the field, the complex feelings of loss and sadness were experienced by both participants and researcher. Discussion: To leave the participant with a sense of abandonment following closure of fieldwork, due to the very nature of the closed environment, risks re-enactment of previous emotional pain of separation. Although not an ethical requirement, the researcher sought out psychotherapeutic supervision during the fieldwork phase with 'Janet', a forensic psychotherapist, which helped to highlight the need for careful closure of research/participant relationships with a vulnerable population. This article brings to the consciousness of prison researchers the need to minimise potential harm by carefully negotiating how to exit the field. Reflections of the researcher are interlinked with utterances from some participants to illustrate the types of departure behaviours. Conclusion: Closure of fieldwork and subsequent researcher departure involving pregnant women in prison requires careful handling to uphold the ethical research principle 'do no harm'. [ABSTRACT FROM AUTHOR]

This paper reports findings from a study of the practical experiences of junior diagnostic radiographers in the UK when managing patients with dementia. Extended semi-structured interviews with six participants (mean experience in diagnostic radiography = 3.5 years) were analysed using interpretative phenomenological analysis. Findings highlight that participants' recurrently cited lack of confidence around their knowledge of dementia, and regular treatment of the condition as a 'generic' thing in practice, had sometimes damaged clinical interaction, particularly when the participant was feeling institutional time pressures. Education for new professionals was seen as lacking in both quantity and context-relevance, with implications for professional confidence and ethical practice. Carers and family members were viewed by participants as potentially positive and negative forces within an examination context, and technological advances in radiography were taken to be clinically advantageous but also actively detrimental to the effective interpersonal care of their patients. [ABSTRACT FROM AUTHOR]

Alzheimer’s disease irrevocably challenges a person’s capacity to communicate with others. Earlier research on these challenges focused on the language disorders associated with the condition and situated language deficit solely in the limitations of a person’s cognitive and semantic impairments. This research falls short of gaining insight into the actual interactional experiences of a person with Alzheimer’s and their family. Drawing on a UK data set of 70 telephone calls recorded over a two-and-a-half year period (2006–2008) between one elderly woman with Alzheimer’s disease, and her daughter and son-in-law, this paper explores the role which communication (and its degeneration) plays in family relationships. Investigating these interactions, using a conversation analytic approach, reveals that there are clearly communicative difficulties, but closer inspection suggests that they arise due to the contingencies that are generated by the other’s contributions in the interaction. That being so, this paper marks a departure from the traditional focus on language level analysis and the assumption that deficits are intrinsic to the individual with Alzheimer’s, and instead focuses on the collaborative communicative challenges that arise in the interaction itself and which have a profound impact on people’s lives and relationships. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion : It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities : Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations. Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience. [ABSTRACT FROM AUTHOR]

There are increasing instances in which researchers study their migrant co-nationals in one language but report their research findings in another language. This raises significant issues regarding the mediating role played by bilingual researcher-translators when translating research data: the decisions they make when bringing the Other's world to their readers, and the strategies they adopt when making such decisions. These issues of data translation, as well as the unique experiences of the researcher-translators and the valuable knowledge that they generate from this process, have not yet been given adequate attention in the academic literature. In response, this article explores a translation analysis which allows the researcher-translator to reflect in detail on the methodological challenges that researcher-translators are likely to encounter. Introducing Poblete's five operations of translation, we highlight the processes that the researcher-translator adopts in recognising, reflecting and negotiating with the (un)translatability of culturally embedded linguistic expression. Focusing on International Student Mobility (ISM) as a particular instance of research translation/analysis as cultural mediation, we demonstrate how our intention to attune to students' own ISM journey in their own language reverberates in the mediation and interventions the researcher-translator conducted through the translation analysis. The article thus emphasises how translating interview scripts as part of the research is more than seeking linguistic correspondence, it is also about understanding non-western lives and life-words through a second-language. [ABSTRACT FROM AUTHOR]

Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. Design: Positioned within a s ocial constructivist paradigm, a secondary discourse analysis of s emi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. Setting/participants: A total of 26 children and young people aged 5–17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. Results: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities. [ABSTRACT FROM AUTHOR]

Background: Social workers have a significant role in hospices working with clients who are facing death but there is limited detailed understanding of the emotional impact of this work on social workers. Research has highlighted that those involved in hospice work find the work both a struggle (e.g. because of heightened emotions) and rewarding (noting that end-of-life care can feel like a privilege). Aim: To explore UK hospice social workers' emotional experiences of work and how this influences their practice. Design: Semi-structured interviews were conducted with hospice social workers. Interviews were transcribed and transcripts were analysed using Interpretative Phenomenological Analysis. Setting/participants: Eight social workers from different hospices in the UK. Results: Five overlapping superordinate themes emerged: making a difference to clients and families ('the difference made'), the emotional impact of working in hospices ('dealing with people's emotions, and death, and dying, it's serious stuff'), the relational context of this type of work ('awareness of affinity to connect'), the ways in which coping is facilitated in hospices ('seen it coming') and a foundation theme, connection and disconnection to values ('(dis)connection to values'). Conclusions: The results offer an exploration of social workers' experiences of their work in hospices; how adept they were at coping and how they prepared for and made sense of the often emotionally-laden experiences encountered. Their experience of the rewards and meaning derived from their work offers important findings for clinical practice. Further research is suggested to explore a multitude of healthcare professionals' perspectives across country settings using Interpretative Phenomenological Analysis. [ABSTRACT FROM AUTHOR]

Secondary trauma arises through indirect exposure to trauma through engaging with first-hand accounts and narratives of traumatic events. While a significant amount of research has explored secondary trauma experienced by professionals who work with survivors of trauma, such as clinicians and front-line service providers, there is little research exploring the experiences of secondary trauma among violence researchers who routinely engage with traumatic first-hand accounts through their work. This study qualitatively explored violence researcher's professional experiences of secondary trauma and their perceptions of what enables and constrains their own coping and resilience. Participants were recruited using purposive sampling methods. Semi-structured interviews were conducted online with seven female violence researchers from the United Kingdom. Questions explored participant's experiences of secondary trauma symptoms related to their research, perceptions of their own coping and resilience, and experiences of organizational support that have enabled or constrained their resilience. Data were analyzed thematically using a coding framework applied reflexively across interview transcripts. All participants reported experiencing symptoms of secondary trauma from their work including cognitive disturbances; altered beliefs of themselves, others or the world; and challenges connecting with others. Participants' assessment of their own expertise in violence research did not generally impact their perception of their own resilience. Organizational support for violence researchers was rarely provided and participants felt generally unsupported—left to manage any resultant distress alone. Research organizations and universities should implement trauma-informed policies which positively transform workplace culture, provide peer support spaces, and conduct effective training in order to mitigate psychological harm and promote resilience among violence researchers. Support should be tailored to the requirements of violence researchers, and institutions should develop policies that are specifically attentive to the needs of researchers who also have lived experience of violence and abuse. [ABSTRACT FROM AUTHOR]

Summary This article reports research that aimed to identify and evaluate potential resilience benefits of visual arts interventions for young people with complex needs. The study involved a review of the ‘arts for resilience’ literature and a case study of 10 weekly resilience-building arts workshops for 10 young people experiencing mental health complexities and/or learning difficulties. Findings We found a significant existing evidence-base linking visual arts practice to individual and community resilience, across disciplinary fields including art therapy, social work, community health, visual arts practice and geographies of health. Visual art activities were utilised to both educate young people about resilience and enhance young people’s overall resilience. Qualitative research material developed from the case study shows that even short-term visual arts interventions can impact on young people’s resilience – crucially, participation was extremely beneficial to young people’s sense of belonging and ability to cope with difficult feelings (topics which arose repeatedly during interview, focus group discussion and observation). Applications Our review and findings from this small case study provide some initial insights into the resilience benefits of participation in visual arts activities. This, combined with the resilience-based practice framework presented here, could aid the effective targeting of interventions for social workers and others working with young people with complex needs. Alongside this research paper, an arts for resilience practice guide has been produced by the project team (including young people). It contains instructions on how to conduct a range of practical visual arts activities that we identified as being resilience-promoting. [ABSTRACT FROM AUTHOR]

Introduction People with co-occurring mental health and substance misuse problems are among the most excluded in society. A need to feel connected to others has been articulated in the occupational science literature although the concept of belonging itself has not been extensively explored within this paradigm. This paper reports findings from research that explored the meaning and experience of belonging for four people living with dual diagnosis in the United Kingdom. Method Researchers employed an interpretative phenomenological approach to the study. Four semistructured interviews were carried out. The interviews were guided by questions around the meaning of belonging, barriers to belonging and how belonging and not belonging impacted on participants’ lives. Data analysis facilitated the identification of themes across individual accounts and enabled comparisons. Findings Data analysis identified four themes – belonging in family, belonging in place, embodied understandings of belonging and barriers to belonging. Conclusion The findings add further insights into the mutable nature of belonging. A link between sense of belonging and attachment theory has been proposed, along with a way to understand the changeable and dependent nature of belonging through ‘dimensions of belonging’. [ABSTRACT FROM AUTHOR]

Over the past few decades the number of women having their first babies over the age of 35 in the United Kingdom has increased. Women’s timing of motherhood is invariably bound up with a discourse of “choice”, and in this paper we consider the role choice plays in the timing of motherhood among women who have been defined as “older” mothers. This article is based on data from 11 semi-structured interviews that explored the transition to motherhood among “older” middle-class mothers. The interviews were analysed using critical discursive psychology. The women drew upon two dominant repertoires when making sense of their timing of motherhood. Within the first repertoire, “older motherhood as circumstance”, older motherhood was presented as the outcome of life circumstances beyond their control, with a lack of the “right” circumstances facilitating “delayed” motherhood. Within the second repertoire, “older motherhood as readiness”, women constructed themselves as (now) prepared for motherhood. “Readiness” was bound up with notions of self-fulfilment, yet also assessments of their ability to be “good” mothers. We conclude that, far from a straightforward choice, the timing of motherhood is shaped by cultural definitions of the “right” circumstances for parenthood, but also cultural definitions of “good” motherhood, which may define when women are “ready”. [ABSTRACT FROM AUTHOR]

Peer research has the potential to empower young people to participate in research by minimising power imbalances between researchers and participants; this may reduce bias and promote improved understanding to inform policy and practice. However, these benefits are not automatic; the relative inexperience of peer researchers adds layers of complexity to the research process. Moreover, the validity of findings from research adopting less traditional methods may be questioned and policy makers may be cautious about accepting this evidence, thus limiting its contribution and impact. This paper explores the advancement of participatory peer researcher methodology in research with children in and leaving care and ethical, practical and data quality issues that arose in two studies exploring young people’s transitions from care to adulthood. It concludes that the peer research methodology can yield rich data but that adequate resources and effective research management are crucial. The authors also caution against a reductionist approach that privileges peer research methodology above other methods of inquiry in the study of transitions from care to adulthood. [ABSTRACT FROM AUTHOR]

Objectives: While the presence of publication bias in clinical research is well documented, little is known about its role in the reporting of health services research. This paper explores stakeholder perceptions and experiences with regard to the role of publication and related biases in quantitative research relating to the quality, accessibility and organization of health services. Methods: We present findings from semi-structured interviews with those responsible for the funding, publishing and/or conduct of quantitative health services research, primarily in the UK. Additional data collection includes interviews with health care decision makers as 'end users' of health services research, and a focus group with patient and service user representatives. The final sample comprised 24 interviews and eight focus group participants. Results: Many study participants felt unable to say with any degree of certainty whether publication bias represents a significant problem in quantitative health services research. Participants drew broad contrasts between externally funded and peer reviewed research on the one hand, and end user funded quality improvement projects on the other, with the latter perceived as more vulnerable to selective publication and author over-claiming. Multiple study objectives, and a general acceptance of 'mess and noise' in the data and its interpretation was seen to reduce the importance attached to replicable estimates of effect sizes in health services research. The relative absence of external scrutiny, either from manufacturers of interventions or health system decision makers, added to this general sense of 'low stakes' of health services research. As a result, while many participants advocated study pre-registration and using protocols to pre-identify outcomes, others saw this as an unwarranted imposition. Conclusions: This study finds that incentives towards publication and related bias are likely to be present, but not to the same degree as in clinical research. In health services research, these were seen as being offset by other forms of 'novelty' bias in the reporting and publishing of research findings. [ABSTRACT FROM AUTHOR]

Objectives: The paper reports on an empirical study of Health and Wellbeing Boards (HWBs) in England. Established by the Health and Social Care Act 2012, HWBs act as place-based hubs for leaders in health, social care, local government and other sectors to come together to address health improvement and the wider determinants of health. Methods: We conducted a three-year study of HWBs (2015–2017) in five localities across England. This involved collecting qualitative data from semi-structured interviews with key actors in the HWBs at strategic and operational levels, and focus group sessions with voluntary-sector participants at each HWB. Results: HWBs have largely followed the path of previous partnerships in terms of a lack of clear aims and objectives, lack of ownership and accountability by partners, and an absence of any significant impact on health outcomes. Conclusions: Many of the features of unsuccessful partnership working were largely displayed by HWBs. Boards require more executive power and ownership from the bottom up if they are to have any real impact. [ABSTRACT FROM AUTHOR]

Definitions of neighbourhood in the Social Sciences are complex, varying in their characteristics (for example, perceived boundaries and content) and between residents of that neighbourhood (for example, by class and ethnicity). This study employs an under-utilised methodology offering strong potential for overcoming some of the difficulties associated with neighbourhood definitions. A mental mapping exercise involving local residents is showcased for an ethnically diverse working-class neighbourhood in south Liverpool. The results demonstrate distinctions between residents in the geographical demarcation of the area and the features included, with important implications for how neighbourhood is best measured and understood. We suggest that one size does not fit all in definitions of neighbourhood, and that mental mapping should form a more common part of a neighbourhood researcher's toolkit. [ABSTRACT FROM AUTHOR]

In this article, we elaborate on the significance of suffering in processes of embodied identity construction. Drawing on interviews with 62 chefs employed in elite kitchens around the world, we make two main contributions. First, we extend our understanding of suffering as a traumatic, alienating experience by theorizing it as a distinctive form of embodied identity work. We show how suffering can function as a mechanism through which people forge an understanding of who they are. Our second contribution extends the first by elaborating on what we call the aesthetics of suffering. We show how suffering can be perversely appreciable, distinguishing and endured in culturally significant, identity-implicative ways. Via this theorization, we progress our understanding of how identities are forged through (and read from) suffering bodies, and add an additional layer of interpretation to research in which matters of embodied identity and suffering are nascent but largely neglected. [ABSTRACT FROM AUTHOR]

Background: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. Aim: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. Design: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. Setting/participants: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). Results: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). Conclusions: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff. [ABSTRACT FROM AUTHOR]

Background: Trial participant recruitment is an interactional process between health care professionals, patients and carers. Little is known about how clinicians carry out this role in palliative care trials and the reasons why they do or do not recruit participants. Aims: To explore how clinicians recruit to palliative care trials, why they choose to implement particular recruitment strategies, and the factors that influence their choices. Design: A qualitative multiple case study of three UK palliative care trials. Data collection included interviews and study documentation. Analysis involved developing and refining theoretical propositions, guided by the '6Ps' of the 'Social Marketing Mix Framework' as an a priori framework (identifying participants, product, price, place, promotion and working with partners). Framework Analysis guided within and then cross-case analysis. Settings/participants: Study investigators and research staff (n = 3, 9, 7) from trial coordinating centres and recruitment sites (hospice and hospital). Results: Cross-case analysis suggests the 'Social Marketing Mix Framework' is useful for understanding recruitment processes but wider contextual issues need to be incorporated. These include the 'emotional labour' of diagnosing dying and communicating palliative and end-of-life care to potential participants and how the recruitment process is influenced by the power relationships and hierarchies that exist among professional groups. These factors can lead to and support paternalistic practices. Conclusions: Those planning trials need to ensure that trial recruiters, depending on their experience and trial characteristics, have access to training and support to address the 'emotional labour' of recruitment. The type of training required requires further research. [ABSTRACT FROM AUTHOR]

Endometriosis is related to adverse quality of life (QoL) and wellbeing outcomes. The way in which endometriosis is perceived by individuals experiencing the condition has not been directly considered, yet illness perceptions (IPs) are predictors of QoL in several chronic conditions. This research aims to gain an understanding of the IPs held by individuals experiencing endometriosis and their impact on QoL. Semi-structured, one-to-one interviews with 30 UK-based participants sought to gain an understanding of participant experiences and perceptions linked to endometriosis. Three themes were constructed through reflexive thematic analysis: a life disrupted; lost sense of self; and complex emotional responses. Largely negative IPs were held by individuals experiencing endometriosis which, along with endometriosis-specific symptoms, fuelled fears for the future and reduced QoL. IP-based interventions may support the QoL of those experiencing endometriosis whilst effective treatment is sought. [ABSTRACT FROM AUTHOR]

Background: Healthcare assistants working in hospice at home settings have a pivotal role in supporting people dying at home and their family caregivers. Some healthcare assistants are working alone in patients' homes, which magnifies some of the issues reported for those working closely with other team members. There is a dearth of evidence in terms of education, training and support needs for healthcare assistants when working alone. Aim: To explore the role of newly employed lone working healthcare assistants delivering palliative care in the community, and their support and educational needs. Design: Qualitative exploratory study using semi-structured interviews. Setting/participants: Healthcare assistants (n = 16) employed less than 12 months by a national non-profit hospice and palliative care provider located across the UK. Results: Analysis of interviews identified three main themes: (1) Healthcare assistants have a unique and complex role catering for holistic needs of patients and their family caregivers in the home environment; (2) preparation for the complex role requires focus on experiential learning and specific training to support holistic care provision; (3) lone workers experience loneliness and isolation and identify peer support as a key intervention to support their wellbeing. Conclusions: Given the complexities of their role within community palliative care teams, there are key learning points in relation to healthcare assistant preparation. Education and support networks should be prioritised to reduce isolation and support ongoing learning and development of newly employed healthcare assistants; all of which is vital to ensure safety and quality of care for the growing number of people they support in the community. [ABSTRACT FROM AUTHOR]

Those who experience parental domestic abuse in childhood are affected in multiple ways, but existing research uses a narrow lens, relying on psychotherapeutic and neuroscientific understandings. This article uses a dialogical theory to explore women's recovery stories. Interviews were conducted with 10 women in England and a voice-centered narrative analysis was used. This article attends to gendered, psychotherapeutic, and neoliberal narrative resources that shaped participants' stories. It concludes that recoveries after domestic abuse in childhood can be considered as dynamic processes that are individual, as well as shaped by social, political, and relational contexts that shape storytelling practices. [ABSTRACT FROM AUTHOR]

Leaving an abusive relationship is a difficult process for all survivors. For men, this can be particularly challenging due to the current knowledge and support for survivors being heavily influenced by a feminist discourse, despite a growing body of research that examines men's experiences. This raises concerns about how men make sense of abuse, where they seek support for injuries and psychological distress, and what services are available to them to help them move on from abuse. Narrative interviews with 12 midlife and older men (aged 45–65 years) who had experienced intimate partner violence from a female were conducted with the aim to explore their journey of leaving abuse. The men's stories revealed themes of how they made sense of what was happening to them (legitimacy as a survivor and self-help), their experiences of service readiness to respond to male victimization (discrimination from police, legal system set up to support women, and service readiness for males), and how men can leave abuse (post-separation abuse and support from friends and family). Implications of the findings demonstrate that many services are still not equipped to support male survivors. The men in our study found it difficult to comprehend their experience as abuse and this is negatively reinforced by ineffective services and stereotypical beliefs about abuse. However, informal support through friends and family is a powerful tool in supporting men to leave abusive relationships. More work is needed to increase awareness of male survivors and ensure that services, including legal systems, are inclusive. [ABSTRACT FROM AUTHOR]

Autistic people face high unemployment rates. One reason for this may be that hiring processes are inaccessible. This study aimed to establish autistic people's unique experiences of hiring processes in the United Kingdom, by comparing them to the experiences of non-autistic neurodivergent people and neurotypical people. Using qualitative and quantitative data from 225 autistic, 64 non-autistic neurodivergent and 88 neurotypical adults, we identified a series of (dis)similarities in participants' views and experiences of recruitment for employment. Similarities across the three groups included (1) frustration with the focus on social skills; (2) a perceived need for more flexible hiring processes; (3) a desire for more clarity and (4) the importance of the environment. Participants also acknowledged the important role employers play in one's decision to disclose a diagnosis or access need. Yet, autistic people faced a set of unique barriers to successful recruitment, over and above those that non-autistic people faced. For example, the perceived pressure to mask autistic traits to succeed and concerns about stigma and discrimination. Participants' recommendations for improvements included the use of more practical recruitment strategies (e.g. work trials), more clarity about what to expect, and improvements in recruiters' understanding of the challenges autistic and neurodivergent candidates may face. Autistic people are less likely to have a job than non-autistic people. One reason for this may be that hiring processes (e.g. job applications, interviews) can be challenging for autistic people. To better understand the experiences of hiring processes in the United Kingdom, we asked 225 autistic, 64 neurodivergent (but not autistic) and 64 adults with no reported area of neurodivergence questions about their experiences using an online survey. We found a range of similarities and differences in responses. For example, participants in all three groups were frustrated with the focus on social skills in recruitment and said they wanted more practical methods (e.g. work trials) that help them show their skills and abilities. Autistic and otherwise neurodivergent participants discussed the importance of the environment (e.g. the interview/assessment room) in improving experiences. Participants also discussed how employers can impact whether somebody decides to disclose their diagnosis or needs – or not. Autistic people experienced some barriers to successful recruitment that non-autistic people did not. For example, autistic people felt they had to hide their autistic traits to gain employment and many autistic people were worried about being discriminated against if they disclosed that they were autistic during the hiring process. To make experiences better, our participants said that employers should offer candidates different recruitment methods and give them more information about the hiring process. They also said employers should improve their understanding of autism and other hidden disabilities so they know the challenges that people might face during recruitment. [ABSTRACT FROM AUTHOR]

Background: Over the next two decades, the numbers of people who will need palliative care in the United Kingdom and Ireland is projected to increase. Hospices play a vital role supporting people who require specialist palliative care input through community-based and inpatient palliative care services. Evidence is needed to understand the role of these different services to inform future service development. Objectives: To describe the reasons for admission, and outcomes at the end of the stay, for patients admitted to two hospice inpatient units (IPUs). Design: This was a mixed-methods study using a convergent, parallel mixed-methods design. Methods: We reviewed the case notes of all patients admitted to two hospice inpatient units from July to November 2019; conducted semi-structured interviews with patients and families; as well as brief structured interviews with inpatient unit staff. Results: Two hundred fifty-nine patients were admitted to a hospice IPU, accounting for 276 admissions in total. Overall, 53% were female; median age was 71 years (range: 26–95 years). Most patients (95%) were White British or Scottish, and 95% had a cancer diagnosis. Most patients were admitted from the community, under one-third were admitted from hospital. Most (85%) had previous palliative care involvement. Nearly, half had district nurse support (48%). Worry and anxiety was frequently reported as a reason for admission, alongside physical concerns. Median length of stay was 12 days, and 68% died during their stay. Hospice was recorded as the preferred place of care for 56% of those who died there. Conclusions: Sustained efforts to promote the hospice as place of care for people with conditions other than cancer are needed alongside greater clarity regarding of the role of the hospice IPU, and who would benefit most from IPU support. [ABSTRACT FROM AUTHOR]

How do employees become politically motivated? In this study, we examine how ethnic minority employees interpret political experiences at work and form motivations to act politically (or not) by uncovering attribution-based political scripts. We propose that cognitive scripts entail learning about the political landscape at work and motivational pathways (personal responses to the political landscape). Adopting a mixed methods approach, we interviewed 40 ethnic minority employees and extracted 810 spontaneous causal attributions about beneficial or detrimental career-related political experiences. Using latent class analysis, we identified how combinations of these attributions formed six political scripts. The content of these scripts revealed that most political experiences motivated participants to opt out of the political arena, unless political activity was legitimized or enabled by senior gatekeepers. Our findings advance scholarship on political cognition, political will, and racialized politics at work by highlighting how the wider organizational political environment shapes employees' political motivation. We also demonstrate how politics can be perceived as racialized and offer practical suggestions for ways organizations can make workplace politics more racially inclusive. [ABSTRACT FROM AUTHOR]

Instability in the lives of young people in care is a public health concern. Placement moves and loss of relationships can have serious implications for young people's overall functioning, as well as their future life outcomes. Despite this, research often lacks the perspective and voice of young people in care. In this qualitative research, Interpretative Phenomenological Analysis was used to provide a deeper insight into young people's perceptions and beliefs about their care experiences to explore the impact of these on their ability to achieve a sense of stability and permanency across time. Semi-structured interviews were conducted with six males from UK foster, residential and semi-independent care homes. The main themes highlighted young people's perceptions of their care environment, relationships with others, sense of self and future under the overarching issue of permanence. Policy and practice implications propose strategies to target instability at the micro-level and how that may facilitate positive outcomes. The study revealed insights that may be helpful for frontline professionals and highlight to policy makers the importance of ensuring environmental and relational stability. An awareness of attachment theory to implement effective caregiving, should be a priority for training parents, caregivers, professionals and policy makers. [ABSTRACT FROM AUTHOR]

Background: Young men with Duchenne Muscular Dystrophy benefit from palliative care that supports their psychosocial needs. Acknowledging the sub-cultures they engage with can support their wellbeing. Anecdotal reports suggest video gaming is a sub-culture engaged with by young men with Duchenne Muscular Dystrophy. Aim: To explore the lived experience of video gaming from the perspective of young men with Duchenne Muscular Dystrophy. Design: Interpretative Phenomenological Analysis approach involving in-depth interviews using a topic guide that focused on social media broadly, with reference to video gaming. Sequential interviewing was undertaken to support participation regarding fatigue and tiredness, symptoms of Duchenne Muscular Dystrophy. Setting/participants: Participants were purposefully recruited from a hospice in the North of England. Twitter was used to support recruitment. Eight young men with Duchenne Muscular Dystrophy were recruited to the study. Results: Five themes were developed; 'gamer as a shared and accepted identity', 'an existential and bodily escapism', 'introspection through video gaming', 'video gaming as a release' and 'when life gives you few choices-video game'. Motivations for engagement with video gaming are diverse and reflective of the situated perspectives of young men with Duchenne Muscular Dystrophy. Conclusions: An awareness of the popular sub-cultures that young men with Duchenne Muscular Dystrophy engage with is key to building a therapeutic alliance, establishing rapport and recognising personhood in interactions between professionals and persons in palliative care settings. This study highlights the value of video gaming, offering professionals valuable insight into its placement in the daily lives of young men with Duchenne Muscular Dystrophy. [ABSTRACT FROM AUTHOR]

Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions. Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. Results: One hundred six participants were interviewed: 26 children (5–17 years), 53 family members (parents/carers of children 0–17 years and siblings (5–17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families. [ABSTRACT FROM AUTHOR]

Objectives: Engaging with finances has become increasingly digitalised in recent years, particularly since the COVID-19 pandemic, yet it is unknown how finance management has been affected in people living with dementia. The aim of this qualitative study was therefore to explore how digitalisation and the recent pandemic have affected finance management skills in people with dementia. Methods: Semi-structured interviews were conducted remotely with people with dementia and unpaid carers living in the UK via phone or Zoom between February and May 2022. Transcripts were coded by one of four different research team members, including two unpaid carers who were public advisers on the project. Data were analysed using inductive thematic analysis. Results: Thirty carers and people with dementia participated, and five overarching themes were identified. Managing finances has been both simplified and made more complicated by digitalising how money is spent and managed, with people with dementia and unpaid carers reporting advantages of using direct debits and debit cards, as well as digital illiteracy barriers for older relatives with dementia. Unpaid carers have received no support in managing their relative's finances, and were found to be burdened by the additional caring duties. Conclusions: Carers need to be supported in managing their relative's finances as well as with their general well-being due to taking on additional caring duties. Digital systems for finance management need to be user-friendly for people with cognitive impairment, with a need for digital literacy training for middle-aged and older adults to avoid difficulties if they develop dementia, and improved access to a computer/tablet/smart phone. [ABSTRACT FROM AUTHOR]

Background: Voluntary and community sector bereavement services are central to bereavement support in the UK. Aim: To determine service providers' perspectives on access to their support before and during the COVID-19 pandemic. Design: Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavement services; (2) Qualitative interviews with staff and volunteers at selected services. Settings/participants: 147 services participated in the survey; 24 interviews were conducted across 14 services. Results: 67.3% of services reported there were groups with unmet needs not accessing their services before the pandemic; most frequently people from minoritised ethnic communities (49%), sexual minority groups (26.5%), deprived areas (24.5%) and men (23.8%). Compared with before the pandemic, 3.4% of services were seeing more people from minoritised ethnic groups, while 6.1% were seeing fewer. 25.2% of services did not collect ethnicity data. Qualitative findings demonstrated the disproportionate impact of the pandemic on minoritised ethnic communities, including disruption to care/mourning practices, and the need for culturally appropriate support. During the pandemic outreach activities were sometimes deprioritised; however, increased collaboration was also reported. Online provision improved access but excluded some. Positive interventions to increase equity included collecting client demographic data; improving outreach, language accessibility and staff representation; supporting other professionals to provide bereavement support; local collaboration and co-production. Conclusions: Service providers report inequities in access to bereavement support. Attention needs to be paid to identifying, assessing and meeting unmet needs for appropriate bereavement support. Identified positive interventions can inform service provision and research. [ABSTRACT FROM AUTHOR]