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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]

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]

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]

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: 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]

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]

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]

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]

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]

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]

Objectives: To examine how the new concept of stroke as an emergency condition led to the development of new clinical pathways for stroke patients in Newcastle Upon Tyne, implemented through protocols which were then rapidly adopted across the UK and further afield. Methods: Historical analysis using health policy documents, published papers and correspondence on stroke alongside 17 interviews with stroke clinicians and managers in the UK and the US. Results: The challenges of implementation stemmed from organisational and professional barriers rather than scientific or technological difficulties. Stroke’s historical status as a non-treatable illness was a barrier to the adoption of acute treatments. Building new pathways for stroke patients by developing protocols for paramedics and emergency room staff originated as a local solution to a local problem but were taken up widely. Discussion: Understanding the clinical response to the reconceptualisation of stroke as a treatable disease contributes to our understandings of the relations between clinical research and practice. These findings have implications for how we understand the translation of new knowledge into practice and its transfer across different clinical communities and settings. Protocols are shown to be a particularly valuable tool, bridging knowledge between communities and manifesting a new identity for stroke. [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]

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]

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]

Objectives: People with cirrhosis are encouraged to participate in shared decision-making with their doctors, but studies suggest that doctors limit the amount of information that is shared. In this study we explore the presence of medical power in clinical encounters in 2015 from a patient perspective and highlight its effects on healthcare interactions. Methods: Qualitative semi-structured interviews were conducted with ten people with cirrhosis attending a tertiary liver transplant centre in southern England. We explored their understanding of their disease and prognosis, and their participation in decision-making. Using the lens of medical power as a framework, we analysed findings into thematic sentences to summarise key ideas whilst preserving the complexity of identified concepts. Results: Three key concepts explained patient perspectives of their communication with doctors: (1) portraying a positive image to doctors, (2) avoiding confrontation with doctors, (3) feeling powerless in the face of doctors' medical knowledge. These concepts show deeper dynamic issues of power during healthcare encounters, illustrated by participants' reluctance to voice their concerns and express themselves, challenge decisions, or seek information. Conclusion: People with cirrhosis struggle to articulate their concerns or challenge decisions on their care and treatment and may worry about potential consequences. Our findings demonstrate the continuing persistence of issues of power at play in contemporary health care. [ABSTRACT FROM AUTHOR]

Abdominal surgery carries with it risks of complications. Little is known about patients' experiences of post-surgical deterioration. There is a real need to understand the psychosocial as well as the biological aspects of deterioration in order to improve care and outcomes for patients. Drawing on in-depth interviews with seven abdominal surgery survivors, we present an idiographic account of participants' experiences, situating their contribution to safety within their personal lived experiences and meaning-making of these episodes of deterioration. Our analysis reveals an overarching group experiential theme of vulnerability in relation to participants' experiences of complications after abdominal surgery. This encapsulates the uncertainty of the situation all the participants found themselves in, and the nature and seriousness of their health conditions. The extent of participants' vulnerability is revealed by detailing how they made sense of their experience, how they negotiated feelings of (un)safety drawing on their relationships with family and staff and the legacy of feelings they were left with when their expectations of care (care as imagined) did not meet the reality of their experiences (care as received). The participants' experiences highlight the power imbalance between patients and professionals in terms of whose knowledge counts within the hospital context. The study reveals the potential for epistemic injustice to arise when patients' concerns are ignored or dismissed. Our data has implications for designing strategies to enable escalation of care, both in terms of supporting staff to deliver compassionate care, and in strengthening patient and family involvement in rescue processes. [ABSTRACT FROM AUTHOR]

Introduction: Post-stroke fatigue (PSF) is common and debilitating. However, while its effective management is a priority for clinicians and stroke survivors, there remains little evidence to provide guidance or underpin practice. Our aim, therefore, was to gain insights into the experiences of clinicians who routinely manage patients with fatigue. Method: Qualitative interview study. The target was to recruit a purposeful sample of approximately 20 participants with expertise in managing PSF and fatigue arising from other conditions. Maximum variation sampling was used to ensure a balance of participants across different settings. Data were analysed using a framework approach, iteratively developed and refined by including emergent themes. Results: We recruited 20 participants: nine occupational therapists (OTs), five physiotherapists, three nurses and three psychologists, which included three 'fatigue experts' from Europe and Australia. Analysis generated core themes around management and strategies used; these were similar regardless of professional background, clinical or geographical setting or condition treated. OTs felt a particular responsibility for fatigue management, although multidisciplinary teamwork was stressed by all. Conclusion: There are clear similarities in clinicians' experiences of managing PSF and fatigue across different conditions and also across professional groups. Clinicians rely predominantly on their own clinical knowledge for guidance. [ABSTRACT FROM AUTHOR]

Background: Retinoblastoma is a rare form of pediatric eye cancer for which enucleation is a common treatment modality. There is an increasing focus upon the impact of enucleation on children and families. This study aimed to explore the experiences of children and their families following enucleation to consider the barriers that may be encountered when adjusting to living with an artificial eye and identifying the support services and strategies used to address these barriers. Methods: Using a descriptive qualitative approach, interviews were conducted with 12 parents and seven children and thematic analysis was used to identify four themes representing the perspective of parents and children. Results: Parent themes identified were (a) entry into the world of retinoblastoma; (b) the importance of specialist support; (c) a family learning to cope; and (d) navigating school. The perspectives of children were (a) the importance of preparation and play; (b) positive reinforcement and hospital support; (c) support and openness at home; and (d) the importance of good school planning. Two overarching themes related to parent and child adaptation were also identified. Discussion: The study findings reveal that the process of adapting to living with an artificial eye extended to influencing decisions around parenting, learning to advocate for their child, and supporting children through school and peer relationships. For children, the importance of ongoing support and information was vital to enhance understanding, adaptation, and development of independence. Overall, the study suggests that children and families undergoing enucleation need continuing, individualized, and specialist support. [ABSTRACT FROM AUTHOR]

This qualitative study explores child-to-parent violence (CPV) in the United Kingdom based on the accounts of adolescents who exhibit this type of family violence. The key areas of interest concern the familial relationships and contexts within which adolescents are embedded, and their perceptions about their emotional states and how these interplay with CPV. Eight participants were recruited in total from a community sample from two different intervention programs aiming to tackle CPV in England. Methods included participant-observation, face-to-face interviews, and handwritten interviews; all data were analyzed thematically. Results suggest that CPV is linked with adverse childhood experiences (ACEs), unsatisfactory relationships with parents, perceived emotional rejection from parents, and emotional dysregulation in young people. In this study, violent behavior was directed not only against mothers but in all cases against siblings and stepfathers. The findings address the complexity of the subject and the need for tailored, evidence-based interventions in the field of CPV. [ABSTRACT FROM AUTHOR]

Background: People with inflammatory rheumatological conditions (IRCs), are at increased risk of comorbidities such as cardiovascular disease, osteoporosis, anxiety and depression. The INCLUDE pilot trial evaluated a nurse-delivered review of people with IRCs which sought to identify and initiate management of comorbid conditions. Aim: A nested qualitative study was undertaken to examine the acceptability of the INCLUDE review. Methods: A qualitative interview-based design in UK primary care settings. A purposive sample of 20 patients who attended an INCLUDE review, were interviewed. Inductive thematic analysis was undertaken. Themes were agreed through multidisciplinary team discussion and mapped onto constructs of the Theoretical Framework of Acceptability (TFA). Results: Six themes mapped onto six of the seven TFA constructs. Patients reported the review to be effective by identifying and initiating management of previously unrecognised comorbid conditions. Some participants reported barriers to following recommendations, such as lifestyle modifications or taking more medication. Conclusion: A nurse-delivered review to identify comorbidities is acceptable to patients with IRCs. The TFA provided a novel analytical lens. [ABSTRACT FROM AUTHOR]

The aim of this research was to explore the experiential knowledge of patient-facing staff working in a prosthetic rehabilitation center in the United Kingdom. Eleven members of staff with varied roles and levels of experience took part in semi-structured interviews. Transcripts were analyzed using thematic analysis. Six themes were identified: (a) defining successful rehabilitation, (b) the complex reality of patient-centered care, (c) organizational and interpersonal challenges, (d) who provides psychological support ? (e) prosthetic as a panacea, and (f) crash landing. These findings highlight the impact of rotational roles in an environment reliant on experiential knowledge, the challenge of applying patient-centered care models, and the negative effect of unrealistic beliefs about prosthetics on patients and staff. This study contributes to a limited pool of literature articulating the experiential knowledge of staff in the context of rehabilitation after major lower limb loss, facilitating the translation of practice-based evidence into evidence-based practice. [ABSTRACT FROM AUTHOR]

Recent evidence suggests that kinship stigma—the experience of being or feeling stigmatized by family members—arises in the stories of people with inflammatory bowel disease (IBD). Adopting Goffman's definition of stigma as "an attribute which is deeply discrediting," we used hermeneutic (interpretive) phenomenology to further explore the meaning of kinship stigma for people with IBD and reveal its significance. In total, 18 unstructured interviews took place in participants' own homes in the United Kingdom, between July 2015 and April 2016. Transcripts were analyzed using a hermeneutic method to reveal three relational themes and one constitutive pattern. Referring to relevant literature, the presence and impact of kinship stigma on people with IBD is revealed. Kinship stigma—experienced as and meaning a lack of acknowledgment—may have wide-ranging implications for health and social care professionals caring for persons with IBD or other chronic illness and their families. [ABSTRACT FROM AUTHOR]

Atmosphere is a neglected topic in social work, and so this article considers the production of atmospheres amongst the residents of an extant 1960s housing scheme in Edinburgh (UK). This is in order to address not only the complexity of feelings about living on such an estate but also to consider what consequences the paying of attention to atmosphere's production and effects might have for a social work concern with welfare and wellbeing. The article is based upon semi-structured and walking interviews with 17 residents – council or private renters and home-owners – of Claremont Court, a mixed, low-rise estate and analyses their description and crafting of atmosphere as a way to understand questions of belonging, welfare and community in situ. After reviewing some existing research on atmosphere and outlining methodological issues relating to the Claremont Court project, the article goes on to consider how residents described their feelings about or sense of the estate and its design before discussing the emergence of contradictory narratives about home. The production of narratives about those needing welfare support is particularly pertinent to atmospheric accounts of the housing scheme, and so the article addresses this before finally making an argument for the relevance of immersive and emplaced accounts of space and place for both social work practice and research. [ABSTRACT FROM AUTHOR]

Objectives: To explore the feasibility of using a stroke-specific toolkit for six-month post-stroke reviews in care homes to identify unmet needs and actions. Design: An observational study including qualitative interviews to explore the process and outcome of reviews. Setting: UK care homes. Participants: Stroke survivors, family members, care home staff (review participants) and external staff involved in conducting reviews (assessors). Interventions: Modified Greater Manchester Stroke Assessment Tool (GM-SAT). Results: The observational study provided data on 74 stroke survivors across 51 care homes. In total, out of 74, 45 (61%) had unmet needs identified. Common unmet needs related to blood pressure, mobility, medicine management and mood. We conducted 25 qualitative interviews, including 13 review participants and 12 assessors. Three overarching qualitative themes covered acceptability of conducting reviews in care homes, process and outcomes of reviews, and acceptability of modified GM-SAT review toolkit. The modified GM-SAT review was positively valued, but stroke survivors had poor recall of the review event including the actions agreed. Care home staff sometimes assisted with reviews and highlighted their need for training to support day-to-day needs of stroke survivors. Assessors highlighted a need for clearer guidance on the use of the toolkit and suggested further modifications to enhance it. They also identified organizational barriers and facilitators to implementing reviews and communicating planned actions to GPs and other agencies. Conclusion: The modified GM-SAT provides a feasible means of conducting six-month reviews for stroke survivors in care homes and helps identify important needs. Further modifications have enhanced acceptability. Full implementation into practice requires staff training and organizational changes. [ABSTRACT FROM AUTHOR]

Introduction: We aimed to identify the barriers and facilitators to the implementation of a high fidelity individual placement and support service in a community forensic mental health setting. Method: In-depth interviews were conducted with clinical staff (n = 11), patients (n = 3), and employers (n = 5) to examine barriers and facilitators to implementation of a high fidelity individual placement and support service. Data was analysed using thematic analysis, and themes were mapped onto individual placement and support fidelity criteria. Results: Barriers cited included competing interests between employment support and psychological therapies, perceptions of patients' readiness for work, and concerns about the impact of returning to work on welfare benefits. Facilitators of implementation included clear communication of the benefits of individual placement and support, inter-disciplinary collaboration, and positive attitudes towards the support offered by the individual placement and support programme among stakeholders. Offences, rather than mental health history, were seen as a key issue from employers' perspectives. Employers regarded disclosure of offending or mental health history as important to developing trust and to gauging their own capacity to offer support. Conclusions: Implementation of individual placement and support in a community mental health forensic setting is complex and requires robust planning. Future studies should address the barriers identified, and adaptations to the individual placement and support model are needed to address difficulties encountered in forensic settings. [ABSTRACT FROM AUTHOR]

The NHS routinely evaluates the quality of life of patients receiving hip or knee replacement surgery using patient-reported outcome measures (PROMs), but some hospital completion rates are only 30%, restricting data usefulness. Statistics limit insights into how and why data are missing, so qualitative methods were used to explore this issue. Observation periods preceded semistructured interviews with 34 preoperative patients attending an orthopedic outpatient clinic. Interview themes covered: completion time/timing, orientation, setting, measures, and practicalities. Triangulated against observations, pragmatic barriers, and facilitators were considered. Refined themes included completion conditions, patient support, and national delivery. Simple improvements (e.g., quiet zone) could improve completion rates and reducing missing data. Reorganizing preoperative leaflets and their systematic distribution via standardized procedures could reassure patients, enhancing PROMs acceptance, while reducing inquiries and subsequent staff burden. Findings have implications for interpreting national statistics. They indicate that further debate about mandating preoperative PROMs is due. [ABSTRACT FROM AUTHOR]

Qualitative researchers are increasingly reanalyzing and synthesizing data sets from different studies, and this method has now been used across trials to inform trial methodology and delivery. Despite this work, however, limited guidance exists about how this method should be employed. This article details an example in which interview data collected during three primary care depression trials were brought together to explore trial participants' study and treatment journeys. It details the process involved and the decisions made. It also presents findings from this synthesis to illustrate how this method can be used to inform the development of future trials and complex interventions, through raising questions about how researchers currently define and design treatment arms and indicating what factors may improve or hinder participants' engagement with their allocated treatment. [ABSTRACT FROM AUTHOR]

Objective: To examine the feasibility of a trial to evaluate web-based physiotherapy compared to a standard home exercise programme in people with multiple sclerosis. Design: Multi-centre, randomized controlled, feasibility study. Setting: Three multiple sclerosis out-patient centres. Participants: A total of 90 people with multiple sclerosis (Expanded Disability Status Scale 4–6.5). Interventions: Participants were randomized to a six-month individualized, home exercise programme delivered via web-based physiotherapy (n = 45; intervention) or a sheet of exercises (n = 45; active comparator). Outcome measures: Outcome measures (0, three, six and nine months) included adherence, two-minute walk test, 25 foot walk, Berg Balance Scale, physical activity and healthcare resource use. Interviews were undertaken with 24 participants and 3 physiotherapists. Results: Almost 25% of people approached agreed to take part. No intervention-related adverse events were recorded. Adherence was 40%–63% and 53%–71% in the intervention and comparator groups. There was no difference in the two-minute walk test between groups at baseline (Intervention-80.4(33.91)m, Comparator-70.6(31.20)m) and no change over time (at six-month Intervention-81.6(32.75)m, Comparator-74.8(36.16)m. There were no significant changes over time in other outcome measures except the EuroQol-5 Dimension at six months which decreased in the active comparator group. For a difference of 8(17.4)m in two-minute walk test between groups, 76 participants/group would be required (80% power, P > 0.05) for a future randomized controlled trial. Conclusion: No changes were found in the majority of outcome measures over time. This study was acceptable and feasible by participants and physiotherapists. An adequately powered study needs 160 participants. [ABSTRACT FROM AUTHOR]

Introduction Health policy promotes living well with dementia. Occupational therapists deliver interventions to support people with dementia and family carers to live well. This study aimed at identifying influences on uptake of a community occupational therapy intervention by people with dementia and carers, as little evidence about this topic exists. Method Seventeen semi-structured, paired interviews with people with dementia and carers were conducted as part of the 'Valuing Active Life in Dementia' research programme. A secondary, qualitative analysis of these interviews explored influences on uptake of the intervention. Findings Four main themes were identified: 'Grabbing at straws and keen to take part'; 'We're trying to put a routine in'; 'We didn't know what to expect', and 'Give it a go'. Factors identified as potentially influencing uptake included whether the intervention was perceived as potentially meeting needs for support and activity, and whether participants were struggling to adjust or cope. Conclusion Despite limited expectations or apprehension, uptake of this intervention was demonstrated. Understanding why people with dementia and carers accept intervention offers can inform what occupational therapists provide and how it is offered. Further research is required to determine the occupational therapy interventions people with dementia and carers might find supportive at different stages of the disease trajectory. [ABSTRACT FROM AUTHOR]

Breast cancer risk classifications are useful for prognosis, yet little is known of their effect on patients. This study clarified women’s understandings of risk as they “journeyed” through the health care system. Breast cancer patients and women undergoing genetic investigation were recruited (N = 25) from a large UK Health Board, 2014–2015, completing a “Book of Experience,” and Bio-photographic elicitation interviews. Stakeholder and Participant Feedback Forums were undertaken with key stakeholders, including patients, oncologists, funders, and policy developers, to inform team understanding. Thematic and visual frameworks from multidisciplinary analysis workshops uncovered two themes: “Subjective Understandings of Risk” and “Journeying Toward an Unknown Future.” Breast cancer patients and women undergoing investigation experienced risk intuitively. Statistical formulations were often perplexing, diverting attention away from concrete life-and-death facts. Following risk classification, care must be co-defined to reduce patients’ foreboding about an unknown future, taking into consideration personal risk management strategies and aspirations for a cancer-free future. [ABSTRACT FROM AUTHOR]

Background: Caring for dying people can contribute to moral distress experienced by healthcare professionals. Moral distress can occur when this caring is restricted by organisational processes, resources or the provision of futile care. These factors apply to end of life care in nursing homes but research is lacking. Aim: To describe how nursing home staff experience moral distress when caring for residents during and at the end of life. Methods: An interpretive descriptive design, using the critical incident technique in semi-structured interviews to collect data from nursing home staff. Data were analysed using a thematic analysis approach. Setting: Four nursing homes in one large metropolitan area. Participants: A total of 16 staff: 2 nurse managers, 4 nurses and 10 care assistants. Findings: Participants described holding ‘good dying’ values which influenced their practice. The four practice-orientated themes of advocating, caring, communicating and relating with residents were found to influence interactions with residents, relatives, general practitioners, and colleagues. These led staff to be able to ‘do the right thing’ or to experience ‘powerlessness’, which could in turn lead to staff perceiving a ‘bad death’ for residents. Conclusion: When there are incongruent values concerning care between staff and others involved in the care of residents, staff feel powerless to ‘do the right thing’ and unable to influence care decisions in order to avoid a ‘bad death’. This powerlessness is the nature of their moral distress. [ABSTRACT FROM AUTHOR]

Background: The Liverpool Care Pathway was used in UK hospitals (late 1990s to July 2014) in an attempt to generate hospice-style high-quality end-of-life care in acute settings. Despite being widely established, there was limited research or contextual evidence regarding this approach or its impact. Growing criticism from the public, media, politicians and healthcare professionals culminated with a critical independent review (July 2013) and subsequent withdrawal of the Liverpool Care Pathway. Aim: This research explores experiences of doctors using the Liverpool Care Pathway, prior to and during its withdrawal, to better understand shortfallings and inform future initiatives in hospital end-of-life care. Design: Individual semi-structured audio-recorded interviews were transcribed verbatim and concurrently analysed using thematic analysis. Setting/participants: Following ethical approval, volunteer participants from an acute UK hospital were sought (n = 73). A total of 18 specialist doctors were purposively selected. Results: Seven themes shaped doctors’ experiences of using the Liverpool Care Pathway: (1) changing perceptions according to length of clinical practice, (2) individual interpretation and application of the Liverpool Care Pathway, (3) limitations arising from setting, speciality and basic end-of-life care competence, (4) understanding and acceptance of medical uncertainty at the end-of-life, (5) centrality of communication and fear of discussing dying, (6) external challenges, including a culture to cure, role modelling and the media and (7) desire for reassurance in end-of-life care decisions. Conclusion: Future initiatives in hospital end-of-life care must address doctors’ fears, (in)abilty to tolerate medical uncertainty, communication skills and understanding of the dying phase, in order to provide optimum care in the last days of life. [ABSTRACT FROM AUTHOR]

This article critically explores accounts of how men attending domestic violence perpetrator programs (DVPP) used the “time out” strategy. Findings are drawn from 71 semi-structured interviews with 44 men attending DVPPs and 27 female partners or ex-partners of men in DVPPs. We describe three ways in which the technique was used: first, as intended, to interrupt potential physical violence; second, through the effective adaption of the time-out rules by victim-survivors; and finally, misappropriation by some men to continue and extend their controlling behaviors. Policy and practice lessons are drawn from the findings through connecting broader and deeper measurements of what success means when working with domestic violence perpetrators to the ways in which the time-out technique was used. [ABSTRACT FROM AUTHOR]

Objective: This qualitative study was imbedded in a randomized controlled trial evaluating the addition of geriatricians to usual care to enable the comprehensive geriatric assessment process with older patients on acute medical units. The qualitative study explored the perspectives of intervention participants on their care and treatment. Design: A constructivist study incorporating semi-structured interviews that were conducted in patients’ homes within six weeks of discharge from the acute medical unit. These interviews were recorded, transcribed, and analysed using thematic analysis. Setting: An acute medical unit in the United Kingdom. Participants: Older patients (n = 18) and their informal carers (n = 6) discharged directly home from an acute medical unit, who had been in the intervention group of the randomized controlled trial. Results: Three core themes were constructed: (1) perceived lack of treatment on the acute medical unit; (2) nebulous grasp of the role of the geriatrician; and (3) on-going health and activities of daily living needs postdischarge. These needs impacted upon the informal carers, who either took over, or helped the patients to complete their activities of daily living. Despite the help received with activities of daily living, a lot of the patients voiced a desire to complete these activities themselves. Conclusions: The participants perceived they were just monitored and observed on the acute medical unit, rather than receiving active treatment, and spoke of on-going unresolved health and activity of daily living needs following discharge, despite receiving the additional intervention of a geriatrician. [ABSTRACT FROM AUTHOR]

Violence against women is a worldwide social and human rights problem that cuts across cultural, geographic, religious, social, and economic boundaries. It affects women in countries around the world, regardless of class, religion, disability, age, or sexual identity. International evidence shows that approximately three in five women experienced physical and/or sexual violence by an intimate partner. However, across the globe, women and girls with impairments or life-limiting illnesses are more susceptible to different forms of violence across a range of environments and by different perpetrators including professionals and family members as well as partners. However, they are likely to be seriously disadvantaged in gaining information and support to escape the abusive relationships. This article stems from the United Kingdom part of a comparative study with three other countries (Austria, Germany, and Iceland) funded by the European Commission (EC; 2013-2015). It presents preliminary findings, generated from life history interviews, about disabled women’s experiences of violence and access to support (both formal and informal) over their life course and their aspirations for the prevention of violence in the future. The article includes examples of impairment-specific violence that non-disabled women do not experience. By bringing the voices of disabled women into the public domain, the article will facilitate a historically marginalized group to contribute to the debate about disability, violence, and support. [ABSTRACT FROM AUTHOR]

We explored health professionals’ views of implementing a systematic voiding program (SVP) in a multi-site qualitative process evaluation in stroke services recruited to the intervention arms of a cluster randomized controlled feasibility trial during 2011-2013. We conducted semi-structured group or individual interviews with 38 purposively selected nursing, managerial, and care staff involved in delivering the SVP. Content analysis of transcripts used normalization process theory (NPT) as a pre-specified organization-level exploratory framework. Barriers to implementing the SVP included perceived lack of suitability for some patient groups, patient fear of extending hospital stay, and difficulties with SVP enactment, scheduling, timing, recording, and monitoring. Enablers included the guidance provided by the SVP, patient and relative involvement, extra staff, improved nursing skill and confidence, and experience of success. Three potential mechanisms of consistency, visibility, and individualization linked the SVP process with improvements in outcome, and should be emphasized in SVP implementation. [ABSTRACT FROM AUTHOR]

Objectives To explore the impact of Diabetes Education and Self Management for Ongoing and Newly Diagnosed (DESMOND) Foundation education, particularly from interviewees' narratives regarding recall of good and bad news messages and behaviour changes. Methods In-depth, semi-structured interviews were conducted with a purposive sample (n=19) of people who had attended education sessions as part of a randomised controlled trial in two UK sites with ethnically diverse populations. Data collection and analysis were informed by the constant comparative approach and facilitated through charting. Results Findings were similar in people from different ethnic backgrounds. Exploration of levels of recall of the sessions suggested that this was variable and sometimes very limited, but that interviewees had all assimilated some relevant learning. Key themes emerged relating to the way in which interviewees recalled and had been influenced by positive (good news) and negative (bad news) messages within the education sessions, including biomedical explanations. Both types of message appeared to have an important role in terms of motivation to change behaviour, but a notable observation was that none of the interviewees recalled receiving bad news messages when diagnosed. Discussion Our findings have highlighted the importance of providing and combining both negative and positive messages within education designed to promote self-management behaviour change. [ABSTRACT FROM AUTHOR]

Laughter is the most frequently transcribed paralinguistic feature in social research interview transcripts, occurring even where the transcriber gives no other indication of how words were said. It is thus a useful starting point for reconstructing aspects of interaction from the traces in standard social science research transcripts. First, we examine the practices of a transcriber in recording laughter by comparing transcripts from one project to the audio recordings. We then analyse the placement of these tokens in transcripts from other projects, considering their relation to the immediately preceding and following talk, drawing on Wallace Chafe’s (2007) interpretation of laughter as the expression of a feeling of ‘non-seriousness’. The laughter marks a transition away from and back to a serious frame. We argue that attention to the recording of laughter as a variable transcription practice can draw the attention of researchers using standard orthographic transcripts to interviewees’ orientations to topics and to the interview process itself. [ABSTRACT FROM AUTHOR]

Reminiscence therapy has the potential to improve quality of life for people with dementia. In recent years reminiscence groups have extended to include family members, but carers’ experience of attending joint sessions is undocumented. This qualitative study explored the experience of 18 family carers attending ‘Remembering Yesterday Caring Today’ groups. Semi-structured interviews were transcribed and subjected to thematic analysis. Five themes were identified: experiencing carer support; shared experience; expectations (met and unmet), carer perspectives of the person with dementia’s experience; and learning and comparing. Family carers’ experiences varied, with some experiencing the intervention as entirely positive whereas others had more mixed feelings. Negative aspects included the lack of respite from their relative, the lack of emphasis on their own needs, and experiencing additional stress and guilt through not being able to implement newly acquired skills. These findings may explain the failure of a recent trial of joint reminiscence groups to replicate previous findings of positive benefit. More targeted research within subgroups of carers is required to justify the continued use of joint reminiscence groups in dementia care. [ABSTRACT FROM AUTHOR]

This article develops theoretical understanding of the involvement of wealthy entrepreneurs in socially transformative projects by offering a foundational theory of philanthropic identity narratives. We show that these narratives are structured according to the metaphorical framework of the journey, through which actors envision and make sense of personal transformation. The journey provides a valuable metaphor for conceptualizing narrative identities in entrepreneurial careers as individuals navigate different social landscapes, illuminating identities as unfolding through a process of wayfinding in response to events, transitions and turning-points. We delineate the journey from entrepreneurship to philanthropy, and propose a typology of rewards that entrepreneurs claim to derive from giving. We add to the expanding literature on narrative identities by suggesting that philanthropic identity narratives empower wealthy entrepreneurs to generate a legacy of the self that is both self- and socially oriented, these ‘generativity scripts’ propelling their capacity for action while ensuring the continuation of their journeys. [ABSTRACT FROM AUTHOR]

Background: Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring. Objective: To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers. Methods: Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring. Results: Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and ‘ticking along’. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive). Conclusion: Burden, resilience, needs and rewards are interrelated. Caregivers’ ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive. Clinical implications: Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans. [ABSTRACT FROM AUTHOR]