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Introduction: Pregnancy and the postpartum period is a difficult time for women living with HIV (WLWH) and postpartum engagement with HIV care is often reduced, with implications for health and well-being. We aimed to explore the postpartum health experiences of WLWH in relation to engagement in HIV care. Methods: The NESTOR (iNvESTigating the pregnancy and pOst-paRtum health experience of women living with HIV) study was a UK based qualitative semi-structured interview study. 61 eligible women were identified. We used a purposive sampling technique to recruit women with differing levels of engagement in HIV care. Interviews were conducted via telephone or video call. Interviews were audio recorded and fully transcribed. We used a thematic approach for data analysis, and two researchers independently coded the data and established the key themes. Results: 11 of 61 (18%) eligible women participated in the interviews, and the three main themes were 'infant feeding decisions', 'managing the risk of mother to child transmission', and 'managing the knowledge of their HIV status'. These themes offer detailed insights into the significant psychological and emotional challenges these women had experienced, and the practical support from healthcare professionals in both HIV and maternity services that had enabled them to navigate those challenges. Discussion: There have been life-changing developments in the treatment and care for people living with HIV. However, even in the U = U (undetectable = untransmittable) era, traditional concerns about breastfeeding, risk of transmission to the infant and stigma continue to shape the postpartum experience of WLWH. As these impact on their emotional and psychological wellbeing, support in these areas needs to be prioritised. Significance: Studies report that postpartum retention in HIV care and viral load suppression are suboptimal for women living with HIV, where an important reason is the financial cost and access to healthcare. However, there is a relative scarcity of evidence describing the problems faced by women accessing HIV and maternity services within socialised healthcare systems, such as those in the UK. Women living with HIV face unanticipated challenges when becoming new mothers relating to disclosure of their HIV status, fears of vertical transmission and perceived perceptions of others deeming them inadequate mothers. Importantly, our analysis illustrates potential opportunities where intervention might mitigate the emotional and physical impact of these issues on their wellbeing throughout pregnancy and postpartum. [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]

Hearing loss and dementia are common in long-term care home (LTCH) residents, causing communication difficulties and worsened behavioural symptoms. Hearing support provided to residents with dementia requires improvement. This study is the first to use the Behaviour Change Wheel (BCW) to identify barriers and propose interventions to improve the provision of hearing support by LTCH staff. Semi-structured interviews with 10 staff members were conducted. Transcripts were analysed according to the BCW's Theoretical Domains Framework alongside reflective thematic analysis. Relevant intervention functions and exemplar interventions were proposed. Staff believed hearing support to be beneficial to residents (Beliefs about Consequences) but lacked knowledge of hearing loss management (Knowledge). Poor collaborations between LTCHs and audiology (Environmental Context and Resources), led to despondency, and apprehension about traditional hearing aids for residents (Optimism). Despite feeling responsible for hearing support, staff lacked personal accountability (Social/Professional Role and Identity). Future interventions should include staff Training (on hearing support), Education (on the consequences of unsupported hearing loss), Enablement (dementia-friendly hearing devices), Incentivisation and Modelling (of Hearing Champions) and Environmental Restructuring (flexible audiology appointments to take place within the LTCH). Interventions should be multi-faceted to boost the capabilities, opportunities and motivations of LTCH staff. Hearing support for care home residents with dementia: Long-term care staff report inadequate knowledge and awareness of how to support residents' hearing needs and a lack of personal accountability for providing hearing support. They also report poor collaborations with audiologists and apprehension about traditional hearing aids. Barriers to hearing support stem from gaps in the capabilities, opportunities and motivations of staff, therefore, interventions should be designed to target all three constructs. Interventions to aid hearing support provision should target staffs' education, training, enablement, persuasion, modelling, incentivisation and environmental restructuring to boost staff capabilities, opportunities and motivations to provide hearing support. [ABSTRACT FROM AUTHOR]

Objectives This study aimed to investigate perceptions of what it means to "age well" and to explore similarities and differences between a Western and non-Western culture (Britain and Java). Methods Qualitative interviews explored how Javanese and British older adults defined aging well, establishing the similarities and differences between cultures. Javanese (n  = 14) and British (n  = 15) adults aged 61–80 (mean age = 68) participated. The data were analyzed using reflexive thematic analysis and organized with NVivo. Results Four themes were identified that captured what it means to age well across cultures: (a) good health is a springboard for aging well ; (b) holding a positive outlook is a decisive factor in aging well ; (c) "having enough" and "feeling safe" provide peace of mind ; and (d) spirituality and religiosity provide tranquility. Although both cultures mentioned similar factors, there were variations in the interpretations and emphasis within themes. For example, Javanese participants emphasized the importance of the social environment whereas British participants highlighted the physical environment. Discussion Differences between cultures are important for understanding how best to support people as they age. For example, in Java, aging well may be best supported by providing a vibrant social environment. For people in Britain, having a safe and secure physical environment may be more important. [ABSTRACT FROM AUTHOR]

Background: People living with human immunodeficiency virus (HIV) are disproportionately impacted by socioeconomic deprivation and are at increased risk of developing other long‐term conditions (LTCs). These illnesses require transformative action to tackle the adverse effects on their health. Data on lived experiences of LTCs among people living with HIV of Black African and Black Caribbean ethnicities are sparse, and how people with LTCs are impacted by social determinants of health (SDoH). Methods: Through a phenomenological study design this qualitative study, conducted in 2022, comprised four focus group discussions (FGDs) with 20 people of Black ethnicities living with HIV were purposively invited from a community organisation (CO) in London, including four semistructured interviews with CO staff. Following transcription, qualitative data were analysed thematically and measures to validate the findings were implemented. Results: The findings are presented in terms of the following four levels of SDoH: (1) individual determinants (such as the impact of SDoH on lifestyle modification and self‐management); (2) interpersonal determinants (such as positive experiences of accessing healthcare for LTCs); (3) clinical determinants (such as care pathway barriers) and (4) systemic determinants (such as systemic barriers related to race/ethnicity). Conclusions: It is necessary to provide ongoing and interactive education to community members who live with HIV, focusing on risks and management of LTCs. Additionally, individuals would benefit from support to navigate increasingly complex and fragmented health services. Health Service staff require cultural competence when caring for patients of Black African and Black Caribbean ethnicities with complex health and psychosocial needs. Patient or Public Contribution: The research team collaborated with an HIV CO in South London from the very start of the project to agree the study design and learn about the realities of their daily lived experiences. Community collaborators helped to develop the semistructured interview and FGD topic guides, and were directly involved in the data gathering, analysis and validation. [ABSTRACT FROM AUTHOR]

Background: Peritonitis is the main treatment‐related complication of peritoneal dialysis and a primary concern for patients and their relatives. Therefore, understanding their perceptions of peritonitis is important. Objectives: To explore patients' and relatives' perceptions of peritoneal dialysis‐associated peritonitis risk, prevention measures and experiences of diagnosis, and experience of perceived stigma. Design: A sequential mixed methods study design was used, including a questionnaire and semi‐structured interviews. Participants: Patients using peritoneal dialysis and relatives (n = 75) from six National Health Service organisations from the United Kingdom. Measurements: A structured questionnaire was administered with patients and relatives (n = 75) using peritoneal dialysis; data were analysed using descriptive statistics. Thirty questionnaire respondents were then purposively sampled and interviewed in‐depth; data were analysed thematically. Data were collected 2017−2018. Ethical and governance approvals were gained. Results: Qualitative and quantitative analyses were integrated and three themes presented: •Perceptions of risk: participants assessed their risk of developing peritonitis and possible implications on their health and relatives. Participants felt greatly responsible for preventing infection.•Preventing peritonitis: participants reported similar and some differing measures to minimise their risk of developing peritonitis. Participants wanted to be seen as "clean".•Diagnosis of peritonitis: peritonitis diagnosis was embarrassing and stigmatising for many individuals. This was influenced by the response of healthcare professionals and the cause of peritonitis. Conclusions: It is important that healthcare professionals are aware of how responsible patients and relatives feel about preventing peritonitis, the emotional effect of this responsibility and crucially the impact this may have on seeking help. [ABSTRACT FROM AUTHOR]

Infants with Down syndrome are more likely to experience feeding problems and mothers are likely to require more feeding support than mothers of typically developing infants. During the COVID-19 pandemic, many feeding support services changed from face-to-face to online, which impacted some maternal feeding experiences negatively, but no studies to date have explored the impact for mothers of infants with Down syndrome. Thematic analysis was conducted on semi-structured interviews from thirteen new mothers of infants (aged 8–17 months) with Down syndrome in the UK. Three superordinate themes were generated: (1) Every baby with Down syndrome has a unique journey, (2) There's no point asking, they won't know, (3) Lack of in-person support. Many mothers expressed frustrations over health professionals' lack of Down syndrome specific knowledge resulting in unmet needs, further magnified due to the nature of the virtual support being offered. Moreover, mothers struggled with reduced social support from other mothers when encountering feeding problems. These results hold real-world implications for health professionals who could provide more specialised face-to-face feeding support to mothers of infants with Down syndrome. This should be prioritised for children's overall development and mothers' wellbeing. [ABSTRACT FROM AUTHOR]

Effective public health interventions rely on understanding how individuals access, interpret, and utilise health information. Studying the health information-seeking behaviour (HISB) of a community can provide valuable insights to inform strategies that address community health needs and challenges. This study explored the online HISBs of People of African Descent (PoAD) in the United Kingdom (UK), a demographic that comprises four percent of the UK population and has a 92.8% active Internet usage rate. Data on the HISB were collected from 21 PoAD across various UK regions through online semi-structured interviews before being analysed using reflexive Thematic Analysis (TA). The participants ranged in age from 20 to 70 years and had a mean age of 42.8 (SD ± 11.4). Our analysis of the interview transcripts revealed five key themes: Internet usage and preferences, attitudes toward social media, barriers to seeking health information online, trust in online health information, and cultural influences on online HISB. Our findings indicate a proactive engagement among PoAD in seeking health information online that is underscored by a preference for professional sources over ethnic congruence. However, concerns about misinformation exist, and there are barriers to accessing health information online, including data privacy, unreliable information, and information relevance and overload. We also found that cultural factors and traditional beliefs impact the adoption of Internet-based interventions among PoAD, highlighting the need for culturally sensitive approaches. Preferences regarding the frequency and delivery of online health information varied among participants, with a majority preferring a weekly update. This study emphasises the critical need for accessible, culturally appropriate, secure, and reliable online health resources tailored to the needs and preferences of the PoAD. [ABSTRACT FROM AUTHOR]

Aim: To generate, test and refine programme theories that emerged from a rapid realist review investigating practising UK Nurses' and Midwives' experiences of effective leadership strategies during the COVID‐19 pandemic. Background: The realist review of literature generated six tentative theories of healthful leadership practices reflecting, working with people's beliefs and values; being facilitative; multiple means of communication and; practical support. The review yielded little insight into the actual impact of the leadership approaches advocated. Methods: A realist study, informed by person‐centredness using mixed‐methods. Online survey (n = 328) and semi‐structured interviews (n = 14) of nurses and midwives across the UK in different career positions/specialities. Quantitative data analysed using descriptive statistics and exploratory factor analysis. Framework analysis for qualitative data using context (C), mechanism (M), outcome (O) configurations of the tentative theories. Results: Three refined theories were identified concerning: Visibility and availability; embodying values and; knowing self. Healthful leadership practices are only achievable within organisational cultures that privilege well‐being. Conclusions: Leaders should intentionally adopt practices that promote well‐being. 'Knowing self' as a leader, coaching and mentoring practice development is important for leadership development. Implications for Clinical Practice: Nurses who feel valued, heard, cared for and safe are more likely to remain in clinical practice. Job satisfaction and being motivated to practice with confidence and competence will impact positively on patient outcomes. Impact: The study addresses the role of leadership in developing healthful workplace cultures. The main findings were six leadership practices that promote healthful cultures. The research will have an impact on strategic and clinical leaders, nurses and midwives. Reporting Method: This study used EQUATOR checklist, RAMASES II as reporting standards for realist evaluations. Patient or Public Contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To increase your awareness of the effects of mesothelioma on veterans and their family caregivers • To recognise the positive and negative influences of a military background on veterans’ and their caregivers’ experiences of mesothelioma • To appreciate the need for sensitive, skilled and honest communication when discussing diagnosis, prognosis and care interventions with veterans with mesothelioma and their caregivers. Background: In the UK, around one in eight adults aged over 65 years is a veteran of the UK armed forces. There is little research into the experiences of veterans with mesothelioma and their family caregivers. Aim: To explore the psychological effects of mesothelioma on UK veterans and their family caregivers from the caregivers’ perspective. Method: Purposive sampling was used to recruit six participants to this qualitative interview study. Individual semi-structured interviews were conducted and data were analysed using interpretative phenomenological analysis. Findings: There was an underlying influence of the military background on several facets of caregivers’ and veterans’ experiences. Veterans and caregivers made efforts to ‘just keep on going’. Psychological benefits were derived from having a stoic outlook, retaining one’s sense of humour, being goal-oriented and putting others first. Holding to high military standards such as loyalty led to broken trust and anger. Straightforward ‘need to know’ communication is a priority in the armed forces and this also influenced caregivers’ and veterans’ experiences. Conclusion: It is important that nurses are aware of the specific cultural factors present in armed forces veterans and their caregivers so that they can assess and address their needs adequately. [ABSTRACT FROM AUTHOR]

Background: Cognitive impairment is common in Parkinson's disease and is associated with poorer quality of life and increased caregiver distress, but little qualitative information is available on lived experiences of people with Parkinson's who also have cognitive impairment. Objectives: The aim of this study was to explore the challenges of cognitive impairment in Parkinson's, triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals. Methods: Semistructured interviews were conducted with 11 people with Parkinson's and cognitive impairment, 10 family caregivers and 27 healthcare professionals, using purposive sampling in the United Kingdom (2019–2021). Cognitive impairment was identified by healthcare professionals and required subjective symptoms. Relevant cognitive diagnoses were recorded. Interviews were audio‐recorded, transcribed and analysed using reflexive thematic analysis. Results: An overarching concept of the compound impact of cognitive and physical decline was developed, with six themes. Four themes describe the experience of living with cognitive impairment in Parkinson's: (1) Challenges in Daily Activities, (2) Psychological Impact and (3) Evolving Communication Difficulties together contributing to (4) Social Shift, encompassing a reduction in wider social activities but intensification of close relationships with increased dependence. A fifth theme (5) Living Well describes positive influences on these experiences, encompassing intrinsic motivation, self‐management strategies and supportive relationships. Furthermore, underlying and shaping the whole experience was the sixth theme: (6) Preconceptions about Cognitive Impairment, describing fear and denial of symptoms and poor understanding of the nature of cognitive impairment in Parkinson's, with differences to other dementia pathologies. Conclusions: Cognitive impairment superimposed on the existing challenges of Parkinson's has a multifaceted impact and makes living with the condition arduous. Increased understanding of the experiences of this group and employing the identified facilitators for living well may be able to improve patient and caregiver experiences. Patient or Public Contribution: Two people with Parkinson's and cognitive impairment and three caregivers contributed to the study. Between them they contributed throughout the entirety of the project, giving input at conceptualisation as well as advice and review of interview questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project. [ABSTRACT FROM AUTHOR]

Background: Treatment fidelity refers to the degree to which an intervention is implemented as intended. Promoting treatment fidelity is important to achieve a valid comparison in intervention research. However, it is often underreported: few studies detail the use and development of fidelity measures. This study aims to promote the treatment fidelity of a modified version of the Derbyshire Language Scheme (M‐DLS), a manualised intervention for children with language difficulties, by exploring participants' opinions on training and intervention delivery. Results inform development of a checklist and scoring system to monitor and promote treatment fidelity in a comparison trial. Method: Ten student speech and language therapists (SLTs) and two research assistants (RAs) participated in the study. All received training on the M‐DLS, and 10 were video‐recorded completing role‐plays of an M‐DLS session in small groups. Feedback was gathered after training and role‐plays in focus groups and interviews. Feedback was interpreted using the constructs of the Theoretical Domains Framework (TDF). A treatment fidelity checklist was then developed using the feedback. The first author and two RAs rated role‐play videos using the checklist to trial it to inform amendments and to promote interrater reliability. Interrater agreement was calculated using Spearman's test of correlation. Results: Participants discussed the importance of having clear materials and time to practise sessions. They suggested amendments to the materials and training to promote treatment fidelity. The checklist and scoring system accounted for participants' suggestions, with amendments detailed in a log. Spearman's correlation results suggested agreement between the raters was strong. Conclusions: Results emphasise the importance of training quality, practice and reflective opportunities and clear materials to promote treatment fidelity. The construction of the checklist and scoring system was described in detail, informing the development of future checklists. After further trialling, the checklist can be used to ensure the M‐DLS is delivered with high treatment fidelity in the comparison trial. What this paper adds: What is already known on this subject: Treatment fidelity is an essential component of intervention effectiveness and efficacy studies, ensuring the intervention is delivered as intended. It is also an essential component of evidence-based clinical practice. However, few research studies report the treatment fidelity process or publish the checklists used, depriving clinicians of useful information for implementation. What this study adds: This study describes in detail the iterative process of treatment fidelity checklist development, engaging those implementing the intervention in development. This ensured clarity and interrater reliability of the checklist. Furthermore, a novel scoring system was developed so that accuracy of implementation can be easily compared across users and across practice attempts. What are the clinical implications of this work?: The importance of treatment fidelity when implementing effective and efficacious interventions cannot be overstated. The treatment fidelity checklist developed for research can be easily adopted to support accurate implementation in clinical practice through an audit process. [ABSTRACT FROM AUTHOR]

Introduction: Menopause is a key workplace issue. Many women will experience symptoms through their later working life. The ambulance service constitutes an employment setting that, dependent on the roles of female staff, can impact on the severity of menopause symptoms and experiences (Prothero et al., 2021). This study aimed to explore female ambulance staff experiences of the menopause transition and suggest ways to improve support offerings. Methods: A qualitative interpretive approach was adopted, involving 12 UK ambulance services. Participants were identified via purposive sampling, and semi-structured interviews were conducted from February to July 2022 via an online platform or telephone. Recordings were transcribed verbatim and analysed using an inductive thematic approach. Results: Twenty-two female participants, aged between 42 and 62 years, were interviewed, and represented all phases of the menopause: peri-menopause (n = 9); menopause (n = 5); post-menopause (n = 3); and unsure (n = 5). Fourteen participants had front-line (patient-facing) or emergency operation centre-based roles, while seven were employed in service support roles. Ten themes were identified: impact on work role; awareness and preparedness for menopause transition; personal impact of symptoms; desired support; appropriate sickness and menopause policy; managerial development; compassion and dignity; impact of working environment; impact on safety; and lack of choice. Lack of understanding and support from colleagues and line managers were identified as the key issues. This is included under the managerial development and compassion and dignity themes. Conclusions: The varying range of menopausal symptoms and their severity impacted on women’s performance at work. The experience of working while going through the menopause could be challenging. Employers should adopt a menopause policy which includes training and awareness for all staff, and suitable for front-line as well as service support staff. There is a need to create a culture where the menopause is not taboo, and women feel able to talk about their symptoms. [ABSTRACT FROM AUTHOR]

Background: Mental ill-health in older adults (aged 60 years and over) is often underdiagnosed and undertreated. Older adults are less likely to access mental health services owing to perceived stigma and fear of being a burden. Non-traditional providers of health care, such as the Fire and Rescue Services (FRS), provide a possible solution to facilitate early detection of problems and help-seeking among older adults, especially in the context of pressured statutory services. Aim: To examine whether and how FRS Home Fire Safety Visits (HFSV) could be optimised to include detection and signposting for mental health problems -- particularly anxiety and depression -- in older adults. Design & setting: This mixed-method qualitative study took place in the West Midlands, UK in 2022. Method: This study involved focus groups (n = 24) and interviews with FRS staff (n = 4) to develop an in-depth contextual understanding of he acceptability and feasibility of expanding HFSV to include identification of anxiety and depression. Results: FRS staff were open to expanding their HFSVs to include mental health, provided they had sufficient training and support from partner agencies in primary and social care settings to accept referrals for service users presenting with symptoms of anxiety and/or depression. Conclusion: The positive reputation of FRS staff and engagement with older adults suggests that HFSV could support the detection of anxiety and depression in older adults, and appropriate signposting to other services including primary care. [ABSTRACT FROM AUTHOR]

Background. Following the dramatic impact of tyrosine kinase inhibitor (TKI) drugs on chronic myeloid leukaemia (CML) survival, research interest has grown into the long-term impact of treatment, identifying difficulties with medication adherence and ongoing side effects. Qualitative studies suggest the disease has a significant physical and psychological impact on patients, and medication management may be complex. However, only one study worldwide has examined healthcare practitioner (HCP) experiences of managing CML treatment and very little UK qualitative research exists exploring the patient experience. Purpose. Our qualitative study aimed to investigate both patient and HCP experiences of managing CML treatment in the UK. Methods. Patients and HCPs were purposively sampled from within the Haematological Malignancy Research Network (HMRN), a UK population-based patient cohort. Qualitative interviews were carried out with seventeen patients and thirteen HCPs, and data were analysed using thematic analysis. Results. Four themes were developed from interview analysis: "Importance of optimal clinical management," "Multiple adherence strategies," "Inconsistent management of adherence," and "Controlling side effects is complex." HCPs tended to focus on sometimes complex, clinical decision-making. Patients described various strategies to support adherence and manage side effects, some of which HCPs seemed to be less aware of. Several patients did not discuss non-adherence or side effects with their HCP, who tended to avoid direct enquiry regarding adherence and could be uncertain about adherence advice, whilst relying on medical strategies to manage side effects. Conclusions. Despite HCPs focusing on the medical management of CML treatment, patients may opt to use self-management techniques to control adherence and side effects and can be reluctant to discuss related difficulties. Increased clinic time and clear adherence advice guidance may support such discussion, in addition to adjusting the context of follow-up care through the introduction of shared care with GP services. [ABSTRACT FROM AUTHOR]

Objectives Glucocorticoids (GCs) ('steroids') are used to treat rheumatic diseases but adverse effects are common. We aimed to explore the impact of GC therapy on health-related quality of life (HRQoL), to inform the development of a treatment-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. Methods Semi-structured qualitative interviews were conducted with patients from the UK, USA and Australia, treated for a rheumatic condition with GCs in the last 2 years. Purposive sampling was used to select participants with a range of demographic and disease features. An initial conceptual framework informed interview prompts and cues. Interviews elicited GC-related physical and psychological symptoms and salient aspects of HRQoL in relation to GC therapy. Interview data were analysed inductively to develop initial individual themes and domains. Candidate questionnaire items were developed and refined. Results Sixty semi-structured qualitative interviews were conducted (UK n  = 34, USA n  = 10, Australia n  = 16). The mean age was 58 years; 39/60 were female; and 18 rheumatic diseases were represented. Some 126 individual themes were identified and organized into six domains: physical symptoms; psychological symptoms; psychological impact of steroids; impact of steroids on participation; impact of steroids on relationships; and benefits of steroids. Candidate questionnaire items were tested and refined by piloting with patient research partners, iterative rounds of cognitive interviews and linguistic translatability assessment, informing a draft questionnaire. Conclusion We describe an international qualitative study to develop candidate items for a treatment-specific PROM for patients with rheumatic diseases. A future survey will enable the validation of a final version of the PROM. [ABSTRACT FROM AUTHOR]

Current health policy, high‐profile failures and increased media scrutiny have led to a significant focus on patient experience in Britain's National Health Service (NHS). Patient experience data is typically gathered through surveys of satisfaction. The study aimed to support a better understanding of the patient experience and patients' expression of it through consideration of the aspects of the patient experience on NHS wards which are by their nature impossible to capture through patient satisfaction surveys. Existential phenomenology was used to develop an in‐depth exploratory narrative, expressed through the voices of the participants. Data collection involved in‐depth face‐to‐face interviews with 12 purposively sampled participants, with analysis by means of hermeneutics. Though the individuality of each experience was apparent and cannot be overemphasised, common factors emerging from the data included uncertainty and unexpectedness, suffering and finitude, the futility of feedback and bureaucracy and absurdity. Overall, participants demonstrated how their individual personalities and expectations affected their response both to illness or injury and to their hospital admissions, highlighting feelings of vulnerability and voicelessness as a response to hospitalisation. The findings of this study provide useful insight into the patient experience on British hospital wards, and the value of an existential–phenomenological approach is demonstrated. [ABSTRACT FROM AUTHOR]

Background: Attendance of skilled and experienced professionals at breech births has been associated with a reduction in adverse perinatal outcomes. We aimed to determine whether United Kingdom National Health Service (NHS) sites could reliably provide attendants with OptiBreech training and/or advanced proficiency (intervention feasibility) and consistent care (fidelity) that meets women's needs (acceptability), with low neonatal admission rates (safety) and recruitment adequate to support a clinical trial (trial feasibility). Methods: Mixed methods implementation evaluation was used. Settings were 13 services in England and Wales. Participants were 82 women requesting support for a vaginal breech birth (VBB) at term. Outcomes were descriptively analyzed. Twenty‐one women were interviewed, and transcripts were analyzed using the Theoretical Framework of Acceptability. Iterative analysis informed subsequent interviews and the ongoing process of implementation across sites. Results: Although we initially suggested multidisciplinary teams, actively recruiting Trusts yielded services where VBB care was provided through a dedicated clinic, organized and delivered primarily by a lead midwife who functioned as a specialist. This model achieved 87.5% fidelity with the intervention's goal of ensuring the attendance of OptiBreech‐trained professionals. Neonatal outcomes remained stable, with an admission rate of 5.5%. Women reported care from specialist midwives as highly acceptable, but the model is vulnerable without a strategic effort to develop additional proficient team members. Conclusions: Dedicated clinics coordinated by specialist midwives appear to be an acceptable and feasible implementation strategy to test the safety and effectiveness of proficient team care for VBB in a clinical trial. Back‐up arrangements should be maintained while additional members of the team develop proficiency. [ABSTRACT FROM AUTHOR]

Introduction: Distance methods of supervision rapidly increased in use during the coronavirus disease 2019 (COVID-19) pandemic, and it is important to consider if these methods meet the needs of supervisees when deciding whether to retain these practices moving forward. Methods: An interpretative phenomenological approach was used to gain insight into the lived experience of distance supervision. Semi-structured interviews were completed with six occupational therapists who had experience receiving distance supervision as a supervisee, all of whom work in inpatient mental health units within a private healthcare company. Results: Interpretative phenomenological analysis revealed four superordinate themes of an altered interaction; the importance of a protected space; factors within the supervisory relationship and maximising the best of both worlds. Conclusion: Distance supervision methods afford increased access for supervisees and a reduction in the practical demands when supervised by an off-site supervisor. There are, however, clear differences in the nature of the experience which need to be considered to ensure that supervisee needs are met. This study provides insight into how distance supervision methods impact on the experience for supervisees and suggests areas for further consideration in moving forward with such approaches. [ABSTRACT FROM AUTHOR]

Background. Cognitive impairment is common in Parkinson's disease (PD) and associated with lower quality of life. Cognitive impairment in PD manifests differently to other dementia pathologies. Provision of optimal care requires knowledge about the support needs of this population. Methods. Eleven people with PD and cognitive impairment (PwP), 10 family caregivers, and 27 healthcare professionals were purposively sampled from across the United Kingdom. Semistructured interviews were conducted in 2019–2021, audio-recorded, transcribed, and analysed using reflexive thematic analysis. Results. Cognitive impairment in PD conveyed increased complexity for clinical management and healthcare interactions, the latter driven by multifactorial communication difficulties. Techniques that helped included slow, simple, and single messages, avoiding topic switching. Information and emotional support needs were often unmet, particularly for caregivers. Diagnostic pathways were inconsistent and awareness of cognitive impairment in PD was poor, both contributing to underdiagnosis. Many felt that PwP and cognitive impairment fell through service gaps, resulting from disjointed, nonspecific, and underresourced services. Personalised care was advocated through tailoring to individual needs of PwP and caregivers facilitated by flexibility, time and continuity within services, and supporting self-management. Conclusions. This study highlights unmet need for people with this complex condition. Clinicians should adapt their approach and communication techniques for this population and provide tailored information and support to both PwP and caregivers. Services need to be more streamlined and collaborative, providing more time and flexibility. There is a need for wider awareness and deeper understanding of this condition and its differences from other types of dementia. [ABSTRACT FROM AUTHOR]

Research suggests that feedback in Emergency Medical Services (EMS) positively affects quality of care and professional development. However, the mechanisms by which feedback achieves its effects still need to be better understood across healthcare settings. This study aimed to understand how United Kingdom (UK) ambulance services provide feedback for EMS professionals and develop a programme theory of how feedback works within EMS, using a mixed-methods, realist evaluation framework. A national cross-sectional survey was conducted to identify feedback initiatives in UK ambulance services, followed by four in-depth case studies involving qualitative interviews and documentary analysis. We used qualitative content analysis and descriptive statistics to analyse survey responses from 40 prehospital feedback initiatives, alongside retroductive analysis of 17 interviews and six documents from case study sites. Feedback initiatives mainly provided individual patient outcome feedback through "pull" initiatives triggered by staff requests. Challenges related to information governance were identified. Our programme theory of feedback to EMS professionals encompassed context (healthcare professional and organisational characteristics), mechanisms (feedback and implementation characteristics, psychological reasoning) and outcomes (implementation, staff and service outcomes). This study suggests that most UK ambulance services use a range of feedback initiatives and provides 24 empirically based testable hypotheses for future research. [ABSTRACT FROM AUTHOR]

Bondage/discipline, dominance/submission, and sadism/masochism (BDSM; "kink") are frequently pathologized as derivatives of abuse. Although the link is unsubstantiated, some kink-identified people who happen to be survivors of trauma may engage in kink, or trauma play, to heal from, cope with, and transform childhood abuse or adolescent maltreatment. The present study sought a thematic model (Braun & Clarke, Qualitative Research in Psychology, 3(2), 77–101, 2006) of trauma recovery through kink using a critical realist, inductive approach to inquiry. Participants were eligible if they had experienced early abuse, were adults, and practiced kink. Six superordinate themes were generated from semi-structured interviews with 20 participants from five countries: cultural context of healing (e.g. using BDSM norms and previous therapy to reframe kink and trauma), restructuring the self-concept (e.g. strengthening internal characteristics which had been harmed or distorted), liberation through relationship (e.g. learning to be valued by intimate others), reclaiming power (e.g. setting and maintaining personal boundaries), repurposing behaviors (e.g. engaging in aspects of prolonged exposure), and redefining pain (e.g. transcending painful memories through masochism). Notably, participants only reported retraumatizing experiences prior to learning about the structural safeguards of BDSM. Research and clinical implications are discussed by drawing on general models of trauma recovery. [ABSTRACT FROM AUTHOR]

Objectives: Emergency department (ED) attendance is common among people with dementia and associated with poor health outcomes. Literature suggests a link between access to community care and the ED, but we know little about the mechanisms behind this link. This study aimed to explore experiences of accessing community and emergency care among people affected by dementia. Methods: Informed by critical realism, semi‐structured online and telephone interviews were conducted with people with dementia and family caregivers, with and without experience of using the ED. Participants were recruited from across the United Kingdom using purposive sampling with maximum variation. A mostly experiential reflexive thematic analysis approach was used, applying the candidacy model of access to deepen interpretation. Results: Two dyad and 33 individual interviews were conducted with 10 people with dementia, 11 current caregivers and 16 bereaved caregivers (men = 11, 70–89 years = 18, white ethnicity = 32). Three themes are reported: (1) Navigating a 'push system', (2) ED as the 'last resort', and (3) Taking dementia 'seriously'. Themes describe a discrepancy between the configuration of services and the needs of people affected by dementia, who resort to the ED in the absence of accessible alternatives. Underlying this discrepancy is a lack of systemic prioritisation of dementia and wider societal stigma. Conclusion: Although a last resort, ED attendance is frequently the path of least resistance for people with dementia who encounter multiple barriers for timely, responsive access to community health and social care. Greater systemic prioritisation of dementia as a life‐limiting condition may help to reduce reliance on the ED through essential development of post‐diagnostic care, from diagnosis to the end of life. Key points: Changing needs of people with dementia are at odds with the structural, legal, and cultural constraints of the health and social care system.Due to barriers in accessing post‐diagnostic care, emergency department attendance becomes the path of least resistance.There is a lack of parity of esteem between dementia and other life‐limiting conditions. [ABSTRACT FROM AUTHOR]

Supported self-management (SSM) is an important part of adapting to life after stroke however it is a complex concept. It is unclear what SSM in stroke consists of or how stroke survivors, families, and clinicians can most effectively work together to support person-centred self-management. In this study, we aimed to explore what was most important in making SSM work in community stroke rehabilitation. We conducted a Q-methodology study with stroke survivors (n = 20), community-based stroke clinicians (n = 20), and team managers (n = 8) across four health boards in Scotland, United Kingdom. Participants ranked 32 statements according to their importance in making SSM work. Factor analysis was used to identify shared viewpoints. We identified four viewpoints: (i) A person-centred approach to build self-confidence and self-worth; (ii) Feeling heard, understood, and supported by everybody; (iii) Preparation of appropriate resources; and (iv) Right thing, right place, right time for the individual. Important across all viewpoints were: a trusting supportive relationship; working in partnership; focusing on meaningful goals; and building self-confidence. Differing views exist on what is most important in SSM. These views could be used to inform quality improvement strategies to support the delivery of SSM that considers the preferences of stroke survivors. Clinicians should be aware of their own viewpoint of supported self-management and consider how their perspective may differ from stroke survivors' and colleagues' perspectives of what's important to support self-management. Working in partnership with stroke survivors plus developing a trusting and supportive relationship with them are core components of supporting self-management in the longer term after stroke. Building a sense of self-worth and self-confidence, a focus on meaningful goals, training and support for staff, and tailoring support to people's needs at the right time are important considerations for supporting longer-term engagement in self-management. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this study was to understand how people living with Parkinson's and healthcare professionals perceived their care management and interactions with health services were affected during the COVID‐19 pandemic. Background: During the COVID‐19 pandemic, many governments introduced restrictions and services that support Parkinson's care management had to cease or be delivered remotely. These changes may have had an impact on the well‐being of people living with Parkinson's. Methods: A qualitative exploratory UK study was carried out. Semi‐structured individual interviews with people living with Parkinson's and health professionals were recorded, transcribed verbatim and analysed using Braun´s and Clarke´s thematic analysis. Eleven patients and 10 health professionals were recruited between April and September 2020. The study was reported using the COREQ. Results: Two main themes were identified. In the first theme, many patients and professionals reported that the COVID‐19 pandemic made some people living with Parkinson's feel isolated and vulnerable due to disruptions to their social networks and usual activities related to Parkinson's disease care. However, other patients remained connected with their networks. In the second theme, patients and most professionals mentioned that some clinical practices were cancelled, delayed or transformed to remote consultation. Conclusion: The COVID‐19 restrictions had an impact on how people living with Parkinson's managed their care and in their interactions with healthcare services. Health professionals should assess the risk of vulnerability, social isolation, physical inactivity and confidence with remote consultations in people living with Parkinson's. This might inform a rethinking of existing clinical interactions with people living with Parkinson's towards a flexible, sustainable, person‐centred care model. Relevance to clinical practice: This study has shown that Parkinson's care management and interactions with healthcare services should provide personalised and flexible support. To meet this challenge, the design of the organisation of health services should include greater involvement of patients and person‐centred care models. [ABSTRACT FROM AUTHOR]

Introduction: Two parallel versions (A and B) of the Oxford Cognitive Screen (OCS) were developed in the United Kingdom (UK) as a stroke‐specific screen of five key cognitive domains commonly affected post‐stroke. We aimed to develop the Australian versions A and B (OCS‐AU), including Australian cut‐scores indicative of impairment. We hypothesised there to be no difference in performance between the UK and Australian normative data cohorts. Methods: Our multidisciplinary expert panel used the UK pre‐defined process to develop the OCS‐AU versions A and B. We then conducted a cross‐sectional normative study. We purposively recruited community‐dwelling, Australian‐born, and educated adults; with no known cognitive impairment; representative of age, sex, education level, and living location; at seven sites (four metropolitan, three regional) across four Australian states. Participants completed one or both OCS‐AU versions in a randomised order. Australian cohorts were compared with the corresponding UK cohorts for demographics using Pearson's chi‐squared test for sex and education, and Welch two‐sample t test for age. For the cut‐scores indicating cognitive impairment, the fifth (95th) percentiles and group mean performance score for each scored item were compared using Welch two‐sample t tests. The pre‐defined criteria for retaining OCS cut‐scores had no statistically significant difference in either percentile or group mean scores for each scored item. Results: Participants (n = 83) were recruited: fifty‐eight completed version A [age (years) mean = 61,SD = 15; 62% female], 60 completed version B [age (years) mean = 62,SD = 13, 53% female], and 35 completed both [age (years) mean = 64,SD = 11, 54% female]. Education was different between the cohorts for version B (12 years, p = 0.002). Cut‐scores for all 16 scored items for the OCS‐AU version B and 15/16 for version A met our pre‐defined criteria for retaining the OCS cut scores. Conclusions: The OCS‐AU provides clinicians with an Australian‐specific, first‐line cognitive screening tool for people after stroke. Early screening can guide treatment and management. [ABSTRACT FROM AUTHOR]

To address the paucity of research on patient perspectives regarding return to driving after Total Hip and Total Knee arthroplasty (THA; TKA), and how this impacts on return-to-work. Employed participants, who had undergone THA or TKA, took part in semi-structured telephone interviews. They were asked about support received regarding driving, who provided this information, and the impact of this on their return to driving and consequently work. Thirty-eight people were interviewed. Although sources of information and advice were available, patients struggled to know who to approach. Interviewees reported variations and contradictions in the advice given on when they could safely return to driving after surgery. Of note, there was little difference in the advice given to those who had undergone THA compared to TKA. Many participants devised their own plan for returning to driving There is inconsistency in driving advice provided after THA and TKA. Consequently, patients make their own decisions about how and when to drive, and develop strategies to accelerate the process. Greater clarity is required from healthcare professionals on time frames for driving post-surgery and for advising patients on their responsibilities around informing the DVLA and insurance companies of their surgery. Healthcare professionals should be aware of medico-legal requirements when advising patients about their legal responsibilities regarding driving after joint arthroplasty. Given the pivotal role of driving in the resumption of work after joint arthroplasty, there needs to be greater importance placed on the provision of explicit advice and support on driving for those undergoing orthopaedic surgery. As driving is a complex skill, the advice given to patients should be individualised. Factors to be considered should be the type of vehicle driven e.g., automatic/manual transmission; height of the vehicle from the ground; the side of the surgery; any medication prescribed which might impact on driving, and consideration of any comorbidities. [ABSTRACT FROM AUTHOR]

Background: Older patients with atrial fibrillation (AF) are increasingly offered direct oral anticoagulants (DOACs) to reduce the risk of catastrophic stroke, but clinical follow-up and compliance checks are still required to maintain patient safety. Although a recent qualitative meta-analysis has explored up-to-date research in this area, little is known qualitatively about clinicians' or patients' views and experiences of DOAC use in primary care in the UK. Aim: To understand the experiences of healthcare practitioners and patients in relation to DOAC use in UK primary care. Design & setting: Semi-structured interviews were undertaken. Sixteen older patients with AF taking DOACs, 10 pharmacists, and six GPs were interviewed in Sheffield, England in 2018. Method: Interview questions were developed following a systematic literature review. Interviews were audio-recorded, transcribed, and analysed using six-stage thematic analysis. Results: The integrated perspectives show that all three participant groups preferred DOACs over warfarin, a preference driven mainly by the safety profile compared with warfarin. GPs valued pharmacists' input in anticoagulant care, and pharmacists discussed patient safety in the context of anticoagulant audits, and highlighted the need for continuous patient education and counselling. Medication reviews by pharmacists were seen as a positive contribution to medicines optimisation. Conclusion: Patients had an overriding trust in their doctors. GPs valued a collaborative approach with other clinicians, and community pharmacists appeared to highlight operational challenges in primary care that may limit the effectiveness of interventions. [ABSTRACT FROM AUTHOR]

Social care Personal Assistants (PAs) are directly employed by individuals to assist with activities of daily living such as help or support with personal care, shopping, household tasks and community participation. This option is encouraged by UK public funding. In England, disabled people's support organisations initially offered assistance with such arrangements, although numbers doing this have declined. The Covid‐19 pandemic provided the opportunity to ask those remaining organisations providing support for PA employers about their activities during this time and the questions being posed to them by PA employers. This paper reports data from 15 interviews undertaken March–July 2021 with disability support organisation representatives. We identified one overarching theme 'Working to prevent and challenge marginalisation of PA employers', with three related subthemes: (1) Advocating for the voice of a forgotten group; (2) Needing to be proactive and (3) Adapting to new tasks and ways of working. Participant accounts focused on representing the needs of disabled people to the authorities and providing concise, timely and accurate information to PA employers, particularly around the use of public funds during Covid‐19. Remote working amplified the digital‐divide, resulting in these organisations working hard to ensure PA employers received important information about their support options. Befriending services and Covid‐hubs were established by some organisations to reduce isolation and risks of poor mental health amongst PA employers. Many of the challenges facing PA employers existed pre‐pandemic but were perceived to have been heightened during it, reflecting the value of and need for the work of these local support organisations. Our findings suggest areas where effective contingency planning drawn from closer collaboration between disability support organisations and central and local government might usefully be focussed. The potential for specific services or organisations to be commissioned to provide such support is discussed. [ABSTRACT FROM AUTHOR]

Background: Self‐management strategies improve asthma outcomes, although interventions for South Asian populations have been less effective than in White populations. Both self‐management and culture are dynamic, and factors such as acculturation and generation have not always been adequately reflected in existing cultural interventions. We aimed to explore the perspectives of Bangladeshi and Pakistani people in the United Kingdom, across multiple generations (first, second and third/fourth), on how they self‐manage their asthma, with a view to suggesting recommendations for cultural interventions. Methods: We purposively recruited Bangladeshi and Pakistani participants, with an active diagnosis of asthma from healthcare settings. Semi‐structured interviews in the participants' choice of language (English, Sylheti, Standard Bengali or Urdu) were conducted, and data were analysed thematically. Results: Twenty‐seven participants (13 Bangladeshi and 14 Pakistani) were interviewed. There were generational differences in self‐management, influenced by complex cultural processes experienced by South Asians as part of being an ethnic minority group. Individuals from the first generation used self‐management strategies congruent to traditional beliefs such as 'sweating' and often chose to travel to South Asian countries. Generations born and raised in the United Kingdom learnt and experimented with self‐management based on their fused identities and modified their approach depending on whether they were in familial or peer settings. Acculturative stress, which was typically higher in first generations who had migration‐related stressors, influenced the priority given to asthma self‐management throughout generations. The amount and type of available asthma information as well as social discussions within the community and with healthcare professionals also shaped asthma self‐management. Conclusions: Recognizing cultural diversity and its influence of asthma self‐management can help develop effective interventions tailored to the lives of South Asian people. Patient or Public Contribution: Patient and Public Involvement colleagues were consulted throughout to ensure that the study and its materials were fit for purpose. [ABSTRACT FROM AUTHOR]

Background: Following the emergence of COVID-19, there have been local and national changes in the way emergency medical service (EMS) staff respond to and treat patients in out-of-hospital cardiac arrest (OHCA). The views of EMS staff on the impact of COVID-19 and management of OHCA have not previously been explored. This study aimed to explore the views of staff, with a specific focus on communication during resuscitation, resuscitation procedures and the perception of risk. Methods: A qualitative phenomenological enquiry was conducted. A purposive sample of n = 20 participants of various clinical grades was selected from NHS EMS providers in the United Kingdom. Data were collected using semi-structured interviews, transcribed verbatim and inductive thematic analysis was applied. Results: Three main themes emerged which varied according to clinical grade, location and guidelines. Decision making: Staff generally felt supported to make best-interest termination of resuscitation decisions. Staff made informed decisions to compromise on recommended levels of personal protective equipment (PPE), since it felt impractical in the pre-hospital context, to improve communication or to reduce delays to care. Service pressures: Availability of operational staff and in-hospital capacity were reduced. Staff felt pressure and disconnect from the continuous updates to clinical guidelines which resulted in organisational change fatigue. Moral injury: The emotional impacts of prolonged and frequent exposure to failed resuscitation attempts and patient death caused many staff to take time away from work to recover. Conclusion: This qualitative study is the first known to explore staff views on the impacts of COVID-19 on OHCA resuscitation, which found positive outcomes but also negative impacts important to inform EMS systems. Staff felt that COVID-19 created delays to the delivery of resuscitation, which were multi-faceted. Staff developed new ways of working to overcome the barriers of impractical PPE. There was little impact on resuscitation procedures. Moving forwards, EMS should consider how to limit organisational change and better support the ongoing emotional impacts on staff. [ABSTRACT FROM AUTHOR]

As the use of social media to mediate learning in the occupational therapy profession gains increasing recognition, calls for tangible guidance with concrete and platform-specific examples have also become prominent. This study aims to describe and analyse the various learning activities qualified occupational therapy practitioners engage with in professional communities known as 'groups' on the Facebook social media platform. Forty-nine (n = 49) practitioners eligible for registration with the Health and Care Professions Council in the United Kingdom completed online questionnaires to produce one-hundred and ten (n = 110) critical incident reports. Data were thematically analysed. Six learning activities were inductively identified: (1) Acquisition of New Ideas; (2) Reinforcement of Existing Knowledge; (3) Adjustments to Existing Knowledge; (4) Learning about Resources; (5) Learning related to Career Advancement; (6) Learning related to Hidden Curriculum. This study showcases the varied ways occupational therapy practitioners learn through Facebook Groups, evidencing the utility of this professional learning environment. Findings enable occupational therapy practitioners to better evaluate which activities to engage in on Facebook Groups for learning and development of higher-quality professional practice. Further research examining the utility of Facebook Groups for professional learning in contrast to other social media platforms is recommended. [ABSTRACT FROM AUTHOR]

Aims: To, firstly, explore student and academic nurse perceptions of classroom content about the assessment and identification of pressure injuries across skin tone diversity and, secondly, to describe the impact of classroom content on student nurse understanding of pressure injury in people with dark skin tones. Design: Qualitative case study employing focus groups and semi‐structured interviews. Methods: Five higher education institutions in the United Kingdom were purposively chosen. At each of the five‐case sites, one focus group with student nurses and one semi‐structured interview with a nurse academic were conducted between May 2018 and April 2019. The participants' narratives were transcribed verbatim and analysed via thematic analysis. Results: Classroom learning was predominately framed through a white lens with white normativity being strongly reinforced through teaching and learning activities. This reinforcement of white normativity was evidenced through two main themes: (i) dominance of whiteness in the teaching and learning of pressure injuries in undergraduate nurse education and (ii) the impact and implications for student nurses of whiteness as the norm in pressure injury teaching. Conclusion: Nurses responsible for the design and delivery of teaching and learning experiences for nursing students need to ensure meaningful teaching and learning experiences. This learning should assist future nurses to interrogate their complicity in a system of white dominance. Impact: Nurse education delivered today influences and shapes nurses of the future. Nurses are the cornerstone of healthcare and play a significant role in the delivery of equitable healthcare. Nurse academics have a duty of care to inform and highlight health inequities in nursing and ultimately to enhance equity in care. [ABSTRACT FROM AUTHOR]

Background: Urea cycle disorders (UCD) are inborn errors of metabolism, typically presenting neonatally. Excess ammonia builds rapidly within the body risking hyperammonemic episodes and potentially death. Long-term management of the condition includes restrictive protein consumption, pharmacological interventions and, in extreme cases, liver transplantation. Pharmacological treatments such as sodium benzoate and sodium phenylbutyrate have proven effective but not without a multitude of negative attributes including poor taste, higher dosage and associated gastrointestinal discomfort that impacts health-related quality of life. Glycerol phenylbutyrate (GPB) has recently become a widely available pharmacological treatment with early reports of improved qualities, including taste and administration method. The following study aims to explore the burden of pharmacological treatment and the effects of the transition to GPB on health-related quality of life in people with a UCD. Results: Nine carers of children living with a UCD (mean age = 12.44, SD = 10.26) were interviewed regarding their experiences of pharmacological treatment in relation to their, and their child's, health-related quality of life after transitioning to GPB. Three main themes were identified: psychological health, physical health and social participation. Carers struggled with anxiety surrounding their child's condition and the battle of administering medication. Medication administration was perceived to have improved since the transition to GPB, alleviating distress for both carer and child. Issues involving school were described, ranging from difficulties integrating their child into mainstream schooling and the impact of treatment on participation in school and extracurricular activities. Carers encountered issues sourcing syringes to administer GPB, which induced stress. It could be suggested that some burden had been relieved by the transition to GPB. However, it appeared that difficulties associated with the illness would persist despite treatment, owing to the continuing nature of the condition. Conclusions: Adhering to a strict pharmacological regime caused immense stress for both carers and children, severely impacting on typical social activities such as eating at a restaurant or going on holiday. GPB was perceived to have alleviated some burden in terms of administration given improved characteristics concerning taste and dosage, important characteristics for both carers and children living with UCD. Practitioners should consider these findings when making clinical decisions for children with UCD and the effect of pharmacological treatment on carer's health-related quality of life. Outreach work to facilitate greater understanding of the condition should be conducted with key locations, such as children's schools. This would also help to alleviate carer burden. [ABSTRACT FROM AUTHOR]

Background: Duchenne muscular dystrophy is a rare genetic neuromuscular disorder, which can result in early death due to disease progression. Ataluren is indicated for the treatment of nonsense mutation Duchenne muscular dystrophy, in ambulatory individuals aged two years and older. This study explored the impact of caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy, as well as the impact of treatment with ataluren on the caregiver experience, using retrospective recall. Methods: Qualitative interviews were conducted with caregivers in the UK. Interviews were conducted by telephone, were recorded and transcribed. Data were analysed using thematic analysis and saturation was recorded. Results: Ten interviews were conducted with parents of individuals aged 4–19 years. Caregivers reported proximal impacts (physical, emotional, time-related), and distal impacts (work, relationships, social life) of caring for their sons. The relationships between these impacts were illustrated in a conceptual model. Changes to the caregiver experience since initiation with their son's treatment were discussed. Conclusion: Caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy has a substantial multifaceted impact on caregivers. Treatments which have the potential to improve symptoms or delay progression, may also have a positive impact on the quality of life of caregivers. [ABSTRACT FROM AUTHOR]

Introduction: The clinical benefits of 24-hour postural management are widely recognised by occupational therapists, but little is known about its impact on service users and carers or whether clinical practice is consistent across regions. The aim of this research was to investigate the use of 24-hour postural management by occupational therapists and to explore its impact on service users with neurodisability and their carers. Methods: Quantitative and qualitative methods were employed in two phases: (a) online survey with 96 occupational therapists across one UK region, with data analysed by descriptive statistics and correlations; (b) focus groups with service users and/or carers (n = 9), with data analysed by thematic analysis. Results: Findings showed moderate positive correlation between frequency of use and (a) all key intervention skills and (b) knowledge of night-time positioning (p < 0.001). Moderate positive correlations were found between level of training and (a) assessment skills and (b) knowledge of night-time positioning (p < 0.001). The overarching theme from focus groups was 'reliance on individualised equipment', with overwhelming frustration from lack of support, loss of identity, equipment cost, insufficient focus on preventative strategies and accessibility issues. Conclusion: A clinical practice guideline, including training, is crucial to direct practice. Providers must engage with service users and carers to address their frustrations. [ABSTRACT FROM AUTHOR]

We report findings of a mixed-method evaluation of Local Area Coordination (LAC) in one English Local Authority—an approach that draws on principles of earlier intervention, and place-, asset- and strengths-based activity. We drew on documentary materials, unstructured observation and qualitative interviews. In total, fifty-five qualitative interviews were conducted with professional stakeholders (including Coordinators, statutory agencies and community organisations), and a purposive sample of individuals supported by LAC. Positively, LAC is operating as intended. It is a flexible and agile approach, and one that is less constrained by the expectations and methods associated with traditional service delivery. Reported impacts include: tackling isolation and loneliness; building a positive vision of the future; identifying non-service solutions and being heard. We discuss the ongoing conceptual and methodological challenges to building the LAC evidence base, fostering professional support and understanding, and managing expectations of individuals and communities in furthering development. Resolving these would allow LAC to move beyond being a promising, local and small-scale transformative development for individuals and families. Its future trajectory is enmeshed in the implications of COVID-19 for individuals, families and communities: rising poverty and widening inequality, a fragile Third Sector, and concerns about community fatigue and erosion of trust. [ABSTRACT FROM AUTHOR]

Psychological problems are common among people with inflammatory bowel disease (IBD) following stoma surgery. However, the ways in which stoma-related psychological needs are identified and addressed in health care settings remain unexplored. In this study, we investigated the perspectives of young people with a stoma and health care professionals about access to psychological support. Semi-structured interviews were conducted with young people with an IBD stoma (18–29 years, n = 13) and health care professionals (n = 15), including colorectal surgeons, gastroenterologists, specialist nurses in IBD and stoma care, and general practitioners in England. Data collection and analysis were informed by constructivist grounded theory. Three analytic categories were developed: "initiating support-seeking," "affirming psychological needs," and "mobilizing psychological support," which capture young peoples' trajectory to access psychological support. Based on the findings, we highlight the need for both patients and health care professionals to assign greater priority to the identification of psychological symptoms post-stoma surgery. More effective care pathways, which include responsive psychological services, would enhance access to psychological support for young people with a stoma. [ABSTRACT FROM AUTHOR]

Background: Although many people are satisfied with their outcome after total knee replacement surgery for osteoarthritis, around 20% report chronic post‐surgical pain. People are often disappointed and unsure about whether their pain is normal and what can be done about it. Given the high prevalence of long‐term post‐operative pain after knee replacement, there is potentially a large hidden population with an unaddressed need for care. Objective: In this study, we focus on understanding why some people choose not to consult health care for chronic post‐surgical pain after knee replacement. Methods: Semi‐structured interviews were conducted with people who had received total knee replacement, at either of two National Health Service hospitals in the United Kingdom, and who had chronic post‐surgical pain (n = 34, age 55‐93 years). Data were audio‐recorded, transcribed and analysed thematically. Results: We found an overall sense of futility amongst participants who believed that nothing further could be done for their on‐going pain. People's perception of their pain was often discordant with that of surgeons and physicians. Other factors that contributed to decisions not to seek help included low expectations about effectiveness and the risks involved in further treatment, treatment burden, participants' prioritization of other health conditions and views about candidacy. Many accepted their on‐going pain. Conclusion: Our study indicates why some people with chronic pain after knee replacement do not seek further health care. Understanding patients' beliefs and expectations about chronic post‐surgical pain can inform approaches that might enable people to seek help in the future. [ABSTRACT FROM AUTHOR]

Background: Young women's attendance at cervical screening in the UK is continuing to fall, and the incidence of invasive cervical cancer is rising. Objectives: We assessed the preferences of non‐attending young women for alternative ways of delivering cervical screening. Design: Postal discrete choice experiment (DCE) conducted during the STRATEGIC study of interventions for increasing cervical screening uptake. Attributes included action required to arrange a test, location of the test, availability of a nurse navigator and cost to the National Health Service. Setting and participants: Non‐attending young women in two UK regions. Main outcome measures: Responses were analysed using a mixed multinomial logit model. A predictive analysis identified the most preferable strategy compared to current screening. Preferences from the DCE were compared with observed behaviours during the STRATEGIC trial. Results: The DCE response rate was 5.5% (222/4000), and 94% of respondents agreed screening is important. Preference heterogeneity existed around attributes with strong evidence for test location. Relative to current screening, unsolicited self‐sampling kits for home use appeared most preferable. The STRATEGIC trial showed this same intervention to be most effective although many women who received it and were screened, attended for conventional cytology instead. Conclusions: The DCE and trial identified the unsolicited self‐sampling kit as the most preferred/effective intervention. The DCE suggested that the decision of some women receiving the kit in the trial to attend for conventional cytology may be due to anxieties around home testing coupled with a knowledge that ignoring the kit could potentially have life‐changing consequences. [ABSTRACT FROM AUTHOR]

Background: This mixed-methods study investigated personal, interpersonal, and environmental factors salient to decisions about being active in neighborhoods of different levels of deprivation. Methods: Twenty-five participants age 70 years and older (10 women) with diverse physical activity levels provided data on their weekly activity patterns (using accelerometry) and their perceived barriers to exercise (questionnaire). They also participated in semistructured individual interviews exploring the barriers and facilitators influencing neighborhood activity. Results: Functional limitations, lack of intrinsic motivation, and not having an activity companion were the highest impact barriers. Walkable access to amenities, positive physical activity perceptions, and existing habit of being active were the highest impact facilitators. Conclusions: The perceived quality and accessibility of the built and natural environments influence neighborhood activity in older adults. However, this relationship might be altered through the influence of personal and interpersonal determinants such as maintenance of good health and functional ability and supportive social networks. [ABSTRACT FROM AUTHOR]

Background: Caregivers frequently provide support to people living with long-term conditions. However, there is paucity of evidence of interventions that support caregivers in their role. Rehabilitation EnAblement in Chronic Heart Failure (REACH-HF) is a novel home-based, health-professional-facilitated, self-management programme for patients with heart failure (HF) and their caregivers. Methods: Based on the random allocation of individual adult patients with reduced ejection fraction (HFrEF) and left ventricular ejection fraction <45% within the past five years, the caregiver of patients was allocated to receive the REACH-HF intervention over 12 weeks (REACH-HF group) or not (control group). Caregiver outcomes were generic health-related quality of life (EQ-5D-5L), Family Caregiver Quality of Life Scale questionnaire (FamQol), Caregiver Burden Questionnaire HF (CBQ-HF), Caregiver Contribution to Self-care of HF Index questionnaire (CC-SCHFI) and Hospital Anxiety and Depression Scale (HADS). Outcomes were compared between groups at 4, 6 and 12 months follow-up. Twenty caregivers receiving REACH-HF were purposively selected for qualitative interviews at 4 and 12 months. Results: Compared with controls (44 caregivers), the REACH-HF group (53 caregivers) had a higher mean CC-SCHFI confidence score at 12 months (57.5 vs 62.8, adjusted mean difference: 9.3, 95% confidence interval: 1.8–16.8, p = 0.016). No significant between group differences were seen in other caregiver outcomes. Qualitative interviews showed that most caregivers who received the REACH-HF intervention made positive changes to how they supported the HF patient they were caring for, and perceived that they had increased their confidence in the caregiver role over time. Conclusion: Provision of the REACH-HF intervention for caregivers of HF patients improved their confidence of self-management and was perceived for some to be helpful in supporting their caregiver role. [ABSTRACT FROM AUTHOR]

Background: Palliative care is acknowledged as an appropriate approach to support older people in nursing homes. Ethical issues arise from many aspects of palliative care provision in nursing homes; however, they have not been investigated in this context. Aim: To explore the ethical issues associated with palliative care in nursing homes in the United Kingdom. Design: Exploratory, sequential, mixed-methods design. Methods: Semi-structured interviews with 13 registered nurses and 10 healthcare assistants (HCAs) working in 13 nursing homes in the United Kingdom were used to explore ethical issues in palliative care. The 'Ethical Issues in Palliative Care for Nursing Homes' instrument was used to measure the frequency and level of distress arising from ethical issues through a cross-sectional survey with 69 registered nurses and 129 healthcare assistants. Data collection occurred between December 2014 and November 2015. Ethical considerations: Ethical approval was granted by Queen's University's School of Nursing and Midwifery Research Ethics Committee and governance sought from each nursing home's manager. Findings: The interviews revealed three themes: ethical issues in practice; relational issues; and organisational issues. No significant differences between registered nurses and healthcare assistants were evident, confirming the patterns emerging from the interviews. Relational issues, primarily issues with residents and families, occurred most frequently and caused greater distress. Conclusion: The shared environment is key in the experience of ethical issues; therefore, multidisciplinary education is needed for ethical decision making in palliative care. Addressing staff knowledge and service organisation may reduce ethical issues locally and provide a benchmark for global change. [ABSTRACT FROM AUTHOR]

Background: In the United States, lung cancer screening aims to detect cancer early in nonsymptomatic current and former smokers. A lung screening pilot service in an area of high lung cancer incidence in the United Kingdom has been designed based on United States trial evidence. However, our understanding of acceptability and reasons for lung screening uptake or decline in a United Kingdom nontrial context are currently limited. Objective: To explore with ever smokers the acceptability of targeted lung screening and uptake decision‐making intentions. Design: Qualitative study using semistructured focus groups and inductive thematic analysis to explore acceptability and uptake decision‐making intentions with people of similar characteristics to lung screening eligible individuals. Setting and participants: Thirty‐three participants (22 ex‐smokers; 11 smokers) men and women, smokers and ex‐smokers, aged 50‐80 were recruited purposively from community and health settings in Manchester, England. Results: Lung screening was widely acceptable to participants. It was seen as offering reassurance about lung health or opportunity for early detection and treatment. Participant's desire to know about their lung health via screening was impacted by perceived benefits; emotions such as worry about a diagnosis and screening tests; practicalities such as accessibility; and smoking‐related issues including perceptions of individual risk and smoking stigma. Discussion: Decision making was multifaceted with indications that current smokers faced higher participation barriers than ex‐smokers. Reducing participation barriers through careful service design and provision of decision support information will be important in lung screening programmes to support informed consent and equitable uptake. [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]

Prolonged diagnostic intervals are associated with poorer outcomes, and the patient interval appears to be a substantial contributor to the overall length of the diagnostic interval. This study sought to understand how the broader context of people's lives influenced symptom appraisal and help‐seeking, comparing experiences by length of the patient interval. Patients referred with a suspicion of lung or colorectal cancer were invited to complete a questionnaire about their symptoms, with 26 respondents purposively sampled to take part in a semi‐structured interview about their patient intervals. Embodied experience, appraisal, help‐seeking decision‐making and consultation were identified as component stages of the patient interval, with the factors affecting movement between these stages located in one of four contextual domains: individual experience, interpersonal relationships, healthcare system interactions and social and temporal context. The length of the patient interval was related to the type of symptom(s) experienced, discussion of symptoms with others and the social responsibilities people held during symptomatic periods. A contextual model of the patient interval illustrates the stages and domains of this interval, as grounded in the data from this study. The model has potential application to future studies examining the patient interval for a range of symptoms. [ABSTRACT FROM AUTHOR]

Background Existing research emphasizes that offenders serving community based sentences are at an increased risk of suicide compared with the general population, however, there is little understanding about the causes of this risk. The aim of the current research was to understand how to support probation clients and prevent suicide, by exploring the experiences of probation clients who carried out near-lethal suicide attempts whilst under probation supervision. Methods In-depth interviews were carried out with seven probation clients who made near-lethal suicide attempts whilst serving a probation sentence. Data were analysed using Interpretative Phenomenological Analysis. Results Participants recounted negative experiences which they perceived to be linked to their suicidal feelings and behaviours, such as experiencing bereavements, perceived loss of control over their mental state or situation, and difficulties relating to stages of their probation sentence. Participants expressed severe difficulties with trusting authorities, making disclosure of suicidal feelings problematic. However, participants emphasized the role that purposeful and meaningful activity can play in suicide prevention. Conclusions Suicide prevention strategies must be tailored to the needs of probation clients across the UK. Mandatory training for probation staff is recommended to help reduce suicides, and support from external agencies should be sought where possible. [ABSTRACT FROM AUTHOR]

The Medical Research Council recommends strong theoretical underpinning in the design and evaluation of lifestyle intervention programmes ( LIPs). This qualitative study aimed to use Basic Needs Theory ( BNT) as a framework to explore participants' perspectives on a workplace dietitian-led LIP. Specifically, experiences with LIP engagement and initiation and maintenance of behaviour change were evaluated. Fifteen semi-structured face-to-face interviews were conducted with participants who had previously completed a workplace cardiovascular disease and type 2 diabetes prevention programme, which involved advice and motivational support with making dietary and lifestyle changes. Interviews were audio recorded and transcribed verbatim. To evaluate the narrative, interpretative phenomenological analyses were used with BNT as the theoretical framework. A total of 12 themes were identified in relation to the three concepts of BNT - autonomy, competence and relatedness - and organised into three domains: intervention engagement, behaviour change initiation and behaviour change maintenance. Line manager and colleague support to attend was reported to have a strong influence on intervention engagement, and the importance of dietitian and peer guidance in initiating behaviour changes was highlighted. Differences between participants who maintained behavioural changes compared to those who relapsed included autonomously seeking support (relatedness) through family, friends, healthcare professionals and commercial slimming organisations. BNT provided an insightful theoretical framework to evaluate factors that underpinned the effectiveness of a dietitian-led cardiovascular and type 2 diabetes prevention LIP. Attendance and retention in workplace LIPs can depend on participants' managerial and colleague support, so recruitment processes should consider targeting managers in marketing and promotional activities. Workplace LIPs may increase the likelihood of behaviour change maintenance by including methods that foster longer term participant relatedness and emotional support. [ABSTRACT FROM AUTHOR]

Current demographic, policy and management changes are a challenge to hospices to develop their volunteering practices. The study upon which this paper is based aimed to explore good practice in volunteer involvement and identify ways of improving care through developing volunteering. The project consisted of a narrative literature review; a survey of volunteer managers; and organisational case studies selected through purposive diversity sampling criteria. A total of 205 staff, volunteers, patients and relatives were interviewed across 11 sites in England in 2012. This article focuses on one of the findings - the place that volunteers occupy between the hospice and the community beyond its walls. External changes and pressures in society were impacting on volunteer management, but were viewed as requiring a careful balancing act to retain the 'spirit' of the hospice philosophy. Honouring the developmental history of the hospice was vital to many respondents, but viewed less positively by those who wished to modernise. Hospices tend to be somewhat secluded organisations in Britain, and external links and networks were mostly within the end-of-life care arena, with few referring to the wider volunteering and community fields. Volunteers were seen as an informal and symbolic 'link' to the local community, both in terms of their 'normalising' roles in the hospice and as providing a two-way flow of information with the external environment where knowledge of hospice activities remains poor. The diversity of the community is not fully represented among hospice volunteers. A few hospices had deliberately tried to forge stronger interfaces with their localities, but these ventures were often controversial. The evidence suggests that there is substantial scope for hospices to develop the strategic aspects of volunteering through greater community engagement and involvement and by increasing diversity and exploiting volunteers' 'boundary' position more systematically to educate, recruit and raise awareness. [ABSTRACT FROM AUTHOR]

The prevalence of older adult female gambling participation and gambling disorder is increasing in the UK, and there is a paucity of published research available to understand possible risk factors for frequent gambling in this demographic. The aim of the current study was to identify and explore motivations and patterns of gambling behavior in high-frequency older adult female gamblers in the UK, from the perspective of the individual and in the context of their experience of aging. Ten UK older adult female high-frequency gamblers were recruited via stratified purposive sampling, with a mean age of 70.4 years. Data was collected via semistructured interviews and analyzed using interpretative phenomenological analysis. Three core themes representative of the experience of this phenomenon emerged from the transcripts, including: Filling voids, emotional escape, and overspending. The present study has provided a contextualized understanding of motivating factors and several age-related vulnerabilities that may account for high gambling frequency in this population. [ABSTRACT FROM AUTHOR]