'It's where I belong': what does it mean to age in place from the perspective of people aged 80 and above? A longitudinal qualitative study (wave one).

BACKGROUND: Most people want to remain at home as they age. Ageing in place - remaining at home and connected to the community - is a national and international policy priority; however, to better understand how policy might be implemented, a more nuanced understanding is required about older adults' lived experiences of ageing in place, especially the experiences of those aged 80 and above. OBJECTIVE: To describe and explore the social processes which enable ageing in place from the perspective of community-dwelling older people (80+). METHODS: Forty-six respondents (80-100+ years) participated in the first wave of a longitudinal qualitative study set in North East England. Semi-structured interviews were conducted in participants' homes between June 2022 and January 2023. Interviews were analysed using reflexive thematic analysis. RESULTS: Participants positioned their homes as a place of freedom and as the antithesis of a 'care home'. Remaining in place was important for all participants; a key priority for them was to remain physically active to enable this. However, many participants faced significant hurdles to remaining in place. These were primarily related to health and mobility issues. Some participants were able to overcome such barriers by drawing on financial resources and available social networks. CONCLUSION: The home is central to understanding older peoples' (80+) experiences of ageing. In a socio-political context which promotes ageing in place, the social factors shaping experiences of ageing in place must be considered. This involves attending to the challenges of later life, particularly health and especially mobility and physical function. Currently, those with resources (social and economic) are better equipped to respond to such challenges, thus potentially exacerbating widening inequalities in ageing. By foregrounding the perspectives of those ageing in place alongside social factors shaping their experiences, our study has important implications for policy and health and social care. We show that a more equitable allocation of resources is vital to fulfil the ageing in place policy agenda. Furthermore, we highlight a need to recognise commitments to ageing in place displayed by people aged 80 and above, especially when remaining in place becomes difficult to achieve.

Systematic review of types of safety incidents and the processes and systems used for safety incident reporting in care homes.

AIMS: To identify the safety incident reporting systems and processes used within care homes to capture staff reports of safety incidents, and the types and characteristics of safety incidents captured by safety incident reporting systems. DESIGN: Systematic review following PRISMA reporting guidelines. METHODS: Databases were searched January 2023 for studies published after year 2000, written in English, focus on care homes and incident reporting systems. Data were extracted using a bespoke data extraction tool, and quality was assessed. Data were analysed descriptively and using narrative synthesis, with types and characteristics of incidents analysed using the International Classification for Patient Safety. DATA SOURCES: Databases were CINAHL, MEDLINE, PsycINFO, EMBASE, HMIC, ASSISA, Nursing and Allied Health Database, MedNar and OpenGrey. RESULTS: We identified 8150 papers with 106 studies eligible for inclusion, all conducted in high-income countries. Numerous incident reporting processes and systems were identified. Using modalities, typical incident reporting systems captured all types of incidents via electronic computerized reporting, with reports made by nursing staff and captured information about patient demographics, the incident and post-incident actions, whilst some reporting systems included medication- and falls-specific information. Reports were most often used to summarize data and identify trends. Incidents categories most often were patient behaviour, clinical process/procedure, documentation, medication/intravenous fluids and falls. Various contributing and mitigating factors and actions to reduce risk were identified. The most reported action to reduce risk was to improve safety culture. Individual outcomes were often reported, but social/economic impact of incidents and organizational outcomes were rarely reported. CONCLUSIONS: This review has demonstrated a complex picture of incident reporting in care homes with evidence limited to high-income countries, highlighting a significant knowledge gap. The findings emphasize the central role of nursing staff in reporting safety incidents and the lack of standardized reporting systems and processes. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The findings from this study can inform the development or adaptation of safety incident reporting systems in care home settings, which is of relevance for nurses, care home managers, commissioners and regulators. This can help to improve patient care by identifying common safety issues across various types of care home and inform learning responses, which require further research. IMPACT: This study addresses a gap in the literature on the systems and processes used to report safety incidents in care homes across many countries, and provides a comprehensive overview of safety issues identified via incident reporting. REPORTING METHOD: PRISMA. PATIENT OR PUBLIC CONTRIBUTION: A member of the research team is a patient and public representative, involved from study conception.

Challenges and improvements associated with transitions between hospitals and care homes during the COVID-19 pandemic: a qualitative study with care home and healthcare staff in England.

BACKGROUND: Care home residents transitioning from hospital are at risk of receiving poor-quality care with their safety being challenged by the SARS-CoV-2 virus (COVID-19) pandemic. Little is known about how care home staff worked with hospital staff and other healthcare professionals to address these challenges and make improvements to increase patient safety. OBJECTIVE: To gain insight into how the COVID-19 pandemic influenced the safety of transitions between hospital and care home. METHOD: Semi-structured interviews were conducted with care home staff and healthcare professionals involved in hospital to care home transitions including doctors, nurses, paramedics, pharmacists, social workers, and occupational therapists. Commonalities and patterns in the data were identified using thematic analysis. RESULTS: Seventy participants were interviewed. Three themes were developed, first, 'new challenges', described care homes were pressurised to receive hospital patients amidst issues with COVID-19 testing, changes to working practices and contentious media attention, which all impacted staff negatively. Second, 'dehumanisation' described how care home residents were treated, being isolated from others amounted to feelings of being imprisoned, caused fear and engendered negative reactions from families. Third, 'better ways of working' described how health and social care workers developed relationships that improved integration and confidence and benefited care provision. CONCLUSION: The COVID-19 pandemic contributed to and compounded high-risk hospital-to-care home discharges. Government policy failed to support care homes. Rapid discharge objectives exposed a myriad of infection control issues causing inhumane conditions for care home residents. However, staff involved in transitions continued to provide and improve upon care provision.

The association between multimorbidity and mobility disability-free life expectancy in adults aged 85 years and over: A modelling study in the Newcastle 85+ cohort.

BACKGROUND: Mobility disability is predictive of further functional decline and can itself compromise older people's capacity (and preference) to live independently. The world's population is also ageing, and multimorbidity is the norm in those aged ≥85. What is unclear in this age group, is the influence of multimorbidity on (a) transitions in mobility disability and (b) mobility disability-free life expectancy (mobDFLE). METHODS AND FINDINGS: Using multistate modelling in an inception cohort of 714 85-year-olds followed over a 10-year period (aged 85 in 2006 to 95 in 2016), we investigated the association between increasing numbers of long-term conditions and (1) mobility disability incidence, (2) recovery from mobility disability and (3) death, and then explored how this shaped the remaining life expectancy free from mobility disability at age 85. Models were adjusted for age, sex, disease group count, BMI and education. We defined mobility disability based on participants' self-reported ability to get around the house, go up and down stairs/steps, and walk at least 400 yards; participants were defined as having mobility disability if, for one or more these activities, they had any difficulty with them or could not perform them. Data were drawn from the Newcastle 85+ Study: a longitudinal population-based cohort study that recruited community-dwelling and institutionalised individuals from Newcastle upon Tyne and North Tyneside general practices. We observed that each additional disease was associated with a 16% increased risk of incident mobility disability (hazard ratio (HR) 1.16, 95% confidence interval (CI): 1.07 to 1.25, p < 0.001), a 26% decrease in the chance of recovery from this state (HR 0.74, 95% CI: 0.63 to 0.86, p < 0.001), and a 12% increased risk of death with mobility disability (HR: 1.12, 95% CI: 1.07- to .17, p < 0.001). This translated to reductions in mobDFLE with increasing numbers of long-term conditions. However, residual and unmeasured confounding cannot be excluded from these analyses, and there may have been unobserved transitions to/from mobility disability between interviews and prior to death. CONCLUSIONS: We suggest 2 implications from this work. (1) Our findings support calls for a greater focus on the prevention of multimorbidity as populations age. (2) As more time spent with mobility disability could potentially lead to greater care needs, maintaining independence with increasing age should also be a key focus for health/social care and reablement services.

Describing transitions in residential status over 10 years in the very old: results from the Newcastle 85+ Study.

BACKGROUND: the very old (aged ≥ 85) are the fastest growing subpopulation of many developed countries but little is known about how their place of residence changes over time. We investigated transitions in residential status in an inception cohort of 85-year-olds over 10 years. METHODS: data were drawn from the Newcastle 85+ Study, a population-based longitudinal study of individuals aged 85 in 2006 (i.e. born in 1921) and permanently registered with a Newcastle or North Tyneside general practice (n = 849). RESULTS: 76.3% lived in standard (non-supported) housing at baseline (age = 85) and few moved into a care home. The majority either remained in standard housing or died over the study period. A significant number who lived in standard housing had dependency and frailty at baseline. DISCUSSION: given the undersupply of care homes, and preference of older people to remain in their own homes as they age, the questions posed by this analysis are how to survive to 85 and remain in standard housing until the age of 85? And how, and by whom, are such a group being supported to remain at home? We need qualitative research to explore the informal-formal care networks of the very old.

Living the everyday of dementia friendliness: Navigating care in public spaces.

Dementia friendly communities are a priority for international policymaking aimed at tackling the social exclusion of people living with dementia. However, what constitutes a dementia friendly community is not well defined nor understood. In this article, we explore what constitutes the enactment of care in a dementia friendly community, focusing on commercial, leisure public places. Through qualitative interviews with carers in the North East of England, we examine how elements of social and material environments shape meaningful everyday practices of care outside the home. Drawing from the literature on materialities of care, we examine three everyday activities: eating out, going to the cinema and shopping. Maintaining such activities in public is part of keeping on with normal family life, but they can also expose individuals to stigmatising judgements by outsiders. Despite this, a complex array of material things, people, places and immaterial qualities such as ambience can come together to make care possible. We suggest there is a need to promote a less rigid, more flexible ethos in these public places. Through a recognition of the relational materialities of care, public spaces could do more to become places where people living with dementia can continue to feel connected and included.

Patient and public involvement in care home research: Reflections on the how and why of involving patient and public involvement partners in qualitative data analysis and interpretation.

BACKGROUND: There is limited evidence for the impact of involving patients and the public (PPI) in health research. Descriptions of the PPI process are seldom included in publications, particularly data analysis, yet an understanding of processes and impacts of PPI is essential if its contribution to research is to be evaluated. OBJECTIVE: To describe the 'how' of PPI in qualitative data analysis and critically reflect on potential impact. METHODS: We focus on the development and critical reflection of our step-by-step approach to collaborative qualitative data analysis (through a series of analysis workshops) in a specific care home study, and our long-term engagement model with patients and the public (termed PPI partners). RESULTS: An open access PPI group, with multiple events over time, sustained broad interest in care home research. Recordings of interview clips, role-play of interview excerpts and written theme summaries were used in workshops to facilitate PPI partner engagement with data analysis in a specific study. PPI resulted in changes to data interpretation and was perceived to make the research process accessible. We reflect on the challenge of judging the benefits of PPI and presenting PPI in research publications for critical commentary. CONCLUSIONS: Patient and public involvement partners who are actively engaged with data analysis can positively influence research studies. However, guidance for researchers is needed on approaches to PPI, including appropriate levels and methods for evaluation. Without more systematic approaches, we argue that it is impossible to know whether PPI represents good use of resources and is generating a real impact.

Framing the failure of medical implants: Media representations of the ASR hip replacements in the UK.

BACKGROUND: During the twentieth century, hip replacement became one of the most popular and successful operations. In the 1990s, a new type of hip replacement namely the metal-on-metal hip resurfacing was developed. This paper draws on one of the available implants, namely the DePuy Orthopaedics' Articular Surface Replacement (ASR) hip system which was withdrawn from the market because of higher than expected rates of failure. It examines media representations on the failure of the ASR metal-on-metal hip replacement device and its subsequent withdrawal from the market. METHODS: Drawing on content analysis this paper explores how systemic failure of the medical implant was framed and performed by press media in the UK. RESULTS: Two narratives were particularly important in framing press media coverage of the ASR case: the role of patients as passive recipients of care and a distinction between health and disability identities as related to how individuals' narratives about the past shaped their sense of present and future. In all cases, the voice of the orthopaedic surgeons responsible for the selection and implantation of the ASR devices remains silent. CONCLUSIONS: Press media coverage of medically induced harm in the UK is significantly less common than coverage of any other patient safety issues and public health debates. This study aims to contribute to the evidence base on how public discourse on medically induced harm becomes framed through the reported experiences of individuals in press media and also how this process influences the legitimacy of various solutions to medical errors or unanticipated outcomes.

Paramedic information needs in end-of-life care: a qualitative interview study exploring access to a shared electronic record as a potential solution.

BACKGROUND: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. METHOD: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. RESULTS: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital - a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. CONCLUSIONS: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice.

The everyday use of assistive technology by people with dementia and their family carers: a qualitative study.

BACKGROUND: Assistive Technology (AT) has been suggested as a means by which people with dementia can be helped to live independently, while also leading to greater efficiencies in care. However little is known about how AT is being used by people with dementia and their carers in their daily routines. This paper reports on a qualitative study exploring the everyday use of AT by people with dementia and their families. METHODS: The research employed a qualitative methodology. Semi structured interviews took place with 39 participants, 13 people with dementia and 26 carers. Key themes were identified using thematic analysis and the constant comparative method. RESULTS: Three categories of AT use in everyday settings were identified; formal AT, accessed via social care services, 'off the shelf AT' purchased privately, and 'do it yourself' AT, everyday household products adapted by families to fulfil individual need in the absence of specific devices. Access to AT was driven by carers, with the majority of benefits being experienced by carers. Barriers to use included perceptions about AT cost; dilemmas about the best time to use AT; and a lack of information and support from formal health and social care services about how to access AT, where to source it and when and how it can be used. CONCLUSIONS: It has been argued that the 'mixed economy' landscape, with private AT provision supplementing state provision of AT, is a key feature for the mainstreaming of AT services. Our data suggests that such a mixed economy is indeed taking place, with more participants using 'off the shelf' and 'DIY' AT purchased privately rather than via health and social care services. However this system has largely arisen due to an inability of formal care services to meet client needs. Such findings therefore raise questions about just who AT in its current provision is working for and whether a mixed market approach is the most appropriate provider model. Everyday technologies play an important role in supporting families with dementia to continue caring; further research is needed however to determine the most effective and person-centred models for future AT provision.

Understanding the challenges to implementing case management for people with dementia in primary care in England: a qualitative study using Normalization Process Theory.

BACKGROUND: Case management has been suggested as a way of improving the quality and cost-effectiveness of support for people with dementia. In this study we adapted and implemented a successful United States' model of case management in primary care in England. The results are reported elsewhere, but a key finding was that little case management took place. This paper reports the findings of the process evaluation which used Normalization Process Theory to understand the barriers to implementation. METHODS: Ethnographic methods were used to explore the views and experiences of case management. Interviews with 49 stakeholders (patients, carers, case managers, health and social care professionals) were supplemented with observation of case managers during meetings and initial assessments with patients. Transcripts and field notes were analysed initially using the constant comparative approach and emerging themes were then mapped onto the framework of Normalization Process Theory. RESULTS: The primary focus during implementation was on the case managers as isolated individuals, with little attention being paid to the social or organizational context within which they worked. Barriers relating to each of the four main constructs of Normalization Process Theory were identified, with a lack of clarity over the scope and boundaries of the intervention (coherence); variable investment in the intervention (cognitive participation); a lack of resources, skills and training to deliver case management (collective action); and limited reflection and feedback on the case manager role (reflexive monitoring). CONCLUSIONS: Despite the intuitive appeal of case management to all stakeholders, there were multiple barriers to implementation in primary care in England including: difficulties in embedding case managers within existing well-established community networks; the challenges of protecting time for case management; and case managers' inability to identify, and act on, emerging patient and carer needs (an essential, but previously unrecognised, training need). In the light of these barriers it is unclear whether primary care is the most appropriate setting for case management in England. The process evaluation highlights key aspects of implementation and training to be addressed in future studies of case management for dementia.

"Successful" ageing in later older age: A sociology of class and ageing in place.

Supporting people to 'age in place' - to live independently at home and remain connected to the community - is an international policy priority. But the process of ageing in place is mediated in a socio-cultural context where neoliberal tropes of successful ageing reproduce a pervasive model about 'ageing well' by elevating ideals of individualised choice and self-governance. Based on two waves of qualitative interviews and interim observations, we employ a Bourdieusian logic to explore the ramifications of this context on the experiences of 46 people in later older age (80+) ageing in place in North East England. All participants enacted everyday improvisatory practices to render their homes habitable. But our participants - most of whom were located in middle-class social positions - supplemented such improvisions with a strategic disposition to plan for and actively shape their ageing-in-place futures. Our participants conveyed a distinct sense of agency over their ageing futures. Underpinning their orientations to practice was an awareness of the value attached to individually 'ageing well' and a distancing from the agedness associated with the fourth age. Our analysis demonstrates the role of capital, accrued throughout the life course, in bringing such future trajectories into effect. The central argument of this paper therefore is that the embodiment of (neoliberal) ideals of successful ageing in place requires the deployment of classed capital. In sum, contrary to the individualising narratives ubiquitous in policy pertaining to ageing well, we show the importance of classed structural moorings in this process.

Care Home Safety Incidents and Safeguarding Reports Relating to Hospital to Care Home Transitions: A Retrospective Content Analysis.

OBJECTIVE: The purpose of this study was to further the understanding of reported patient safety events at the interface between hospital and care home including what active failings and latent conditions were present and how reporting helped learning. METHODS: Two care home organizations, one in the North East and one in the South West of England, participated in the study. Reports relating to a transition and where a patient safety event had occurred were sought during the COVID-19 (SARS-CoV-2) virus prepandemic and intrapandemic periods. All reports were screened for eligibility and analyzed using content analysis. RESULTS: Seventeen South West England care homes and 15 North East England care homes sent 114 safety incident reports and after screening 91 were eligible for review. A hospital discharge transition (n = 78, 86%) was most common. Pressure damage (n = 29, 32%), medication errors (n = 26, 29%) and premature discharge (n = 21, 23%) contributed to 84% of the total reporting. Many 'active failings' (n = 340) were identified with fewer latent conditions (failings) (n = 14, 15%) being reported. No examples of individual learning were identified. Organization and systems learning were identified in 12 reports (n = 12, 13%). CONCLUSIONS: The findings highlight potentially high levels of underreporting. The most common safety incidents reported were pressure damage, medication errors, and premature discharge. Many active failings causing numerous staff actions were identified emphasizing the cost to patients and services. Additionally, latent conditions (failings) were not emphasized; similarly, evidence of learning from safety incidents was not addressed.

The domestication of remote monitoring: The materialisation of care?

Recent years have seen an influx of technologies aimed at enabling older people to remain at home. Remote monitoring is one such technology. By tracking the body as it moves through time and space, remote monitoring enables a care connection which transcends the physical boundaries of the home. Based on 43 interviews conducted with 21 older people trialling remote monitoring, this study critically explores how older people integrate (or not) remote monitoring into the material and symbolic fabric of their homes. Drawing on the concept of domestication alongside materialities of care, we explore the active ways in which participants make sense of, and incorporate, remote monitoring into the intimacy of their homes. We find that domesticating remote monitoring, an apparently mundane and ordinary object, is a complex and conflicting process which has consequences for the ageing body. Through its domestication, remote monitoring occupies an ambiguous symbolic and material position at the intersection of public and private. While the rationale behind remote monitoring is to minimise physical risk, we find that its proximity to intimacy and its capacity to 'monitor' everyday practice poses symbolic and social risks to people's sense of home and their identities. Our findings highlight how ageing bodies are mediated and reconfigured through these technologies and how ageing bodies are potentially viewed as in decline and/or risky. Remote monitoring was viewed as a 'safety net'; however, acknowledging that safety was a concern, simultaneously positioned participants as 'at risk', a category associated with decline and dependency. Once incorporated into the home, the technology represented an 'active ageing' gaze which, through its imagined capacity to judge, risked disrupting the flow of everyday routines; it elicited a heightened awareness of otherwise taken-for-granted practices. Despite this, for some participants, remote monitoring was appropriated to enact care for others, a way to alleviate the emotional labour of family members, and thus refute normative assumptions underpinning remote monitoring about older people as passive recipients of care. Remote monitoring is not passively incorporated into the domestic setting. On the contrary, older people actively assign symbolic meaning to it.

Safety and efficacy of an artificial intelligence-enabled decision tool for treatment decisions in neovascular age-related macular degeneration and an exploration of clinical pathway integration and implementation: protocol for a multi-methods validation study.

INTRODUCTION: Neovascular age-related macular degeneration (nAMD) management is one of the largest single-disease contributors to hospital outpatient appointments. Partial automation of nAMD treatment decisions could reduce demands on clinician time. Established artificial intelligence (AI)-enabled retinal imaging analysis tools, could be applied to this use-case, but are not yet validated for it. A primary qualitative investigation of stakeholder perceptions of such an AI-enabled decision tool is also absent. This multi-methods study aims to establish the safety and efficacy of an AI-enabled decision tool for nAMD treatment decisions and understand where on the clinical pathway it could sit and what factors are likely to influence its implementation. METHODS AND ANALYSIS: Single-centre retrospective imaging and clinical data will be collected from nAMD clinic visits at a National Health Service (NHS) teaching hospital ophthalmology service, including judgements of nAMD disease stability or activity made in real-world consultant-led-care. Dataset size will be set by a power calculation using the first 127 randomly sampled eligible clinic visits. An AI-enabled retinal segmentation tool and a rule-based decision tree will independently analyse imaging data to report nAMD stability or activity for each of these clinic visits. Independently, an external reading centre will receive both clinical and imaging data to generate an enhanced reference standard for each clinic visit. The non-inferiority of the relative negative predictive value of AI-enabled reports on disease activity relative to consultant-led-care judgements will then be tested. In parallel, approximately 40 semi-structured interviews will be conducted with key nAMD service stakeholders, including patients. Transcripts will be coded using a theoretical framework and thematic analysis will follow. ETHICS AND DISSEMINATION: NHS Research Ethics Committee and UK Health Research Authority approvals are in place (21/NW/0138). Informed consent is planned for interview participants only. Written and oral dissemination is planned to public, clinical, academic and commercial stakeholders.

Patients' perspectives on timing of urinary catheter removal after surgery.

UNLABELLED: A prolonged catheter duration is a major risk factor for catheter-associated urinary tract infection, with bacteriuria increasing by 5% per day (Gokula et al, 2004). AIM: In this study, the authors explored patients' perceptions of the care process relating to peri-operative catheterisation to identify patient factors that encourage early removal. METHOD: Semi-structured interviews, incorporating a grounded theory approach, were performed on three men and seven women during 2010. Interviews were transcribed and analysed using constant comparative method and thematic framework analysis. RESULTS: Catheter duration ranged 1-10 days. Main themes elicited included: lack of understanding of the purpose and catheterisation process; loss of patient autonomy and dignity; and impact of environmental factors. CONCLUSION: Lack of knowledge of the catheterisation process among participants led to fears and concerns that may have contributed to delayed catheter removal. Changes to patient care that are likely to reduce catheter duration include ensuring the provision of pre-operative information, greater patient involvement in catheter removal decisions, and provision of easily accessible toilet facilities.

Residents transitioning between hospital and care homes: protocol for codesigning a systems-level response to safety issues (SafeST study).

INTRODUCTION: The aim of this study is to develop a better understanding of incident reporting in relation to transitions in care between hospital and care home, and to codesign a systems-level response to safety issues for patients transitioning between hospital and care home. METHODS AND ANALYSIS: Two workstreams (W) will run in parallel. W1 will aim to develop a taxonomy of incident reporting in care homes, underpinned by structured interviews (N=150) with care home representatives, scoping review of care home incident reporting systems, and a review of incident reporting policy related to care homes. The taxonomy will be developed using a standardised approach to taxonomy development. W2 will be structured in three phases (P). P1a will consist of ≤40 interviews with care home staff to develop a better understanding of their specific internal systems for reporting incidents, and P1b will include ≤30 interviews with others involved in transitions between hospital and care home. P1a and P1b will also examine the impact of the SARS-CoV-2 pandemic on safe transitions. P2 will consist of a retrospective documentary analysis of care home data relating to resident transitions, with data size and sampling determined based on data sources identified in P1a. A validated data extraction form will be adapted before use. P3 will consist of four validation and codesign workshops to develop a service specification using National Health Service Improvement's service specification framework, which will then be mapped against existing systems and recommendations produced. Framework analysis informed by the heuristic of systemic risk factors will be the primary mode of analysis, with content analysis used for analysing incident reports. ETHICS AND DISSEMINATION: The study has received university ethical approval and Health Research Authority approval. Findings will be disseminated to commissioners, providers and regulators who will be able to use the codesigned service specification to improve integrated care.

Views of children with cerebral palsy and their parents on the effectiveness and acceptability of intensive speech therapy.

Purpose: To understand children and parents' views of the effectiveness and acceptability of intensive dysarthria therapy.Materials and Methods: Twenty-two children with cerebral palsy and dysarthria joined a pilot RCT comparing intensive therapy and usual care. Children (n = 11) allocated to dysarthria therapy comprising three 40-minute sessions per week for six weeks and their parents (n = 11) were interviewed two weeks before and six weeks after therapy. Interviews were transcribed verbatim and analysed thematically.Results: Analysis revealed five themes: Motivations, My new voice; The new me; I can do more; Success rooted in therapy design. Children had received little therapy for speech and were keen to improve intelligibility. Overall, therapy was viewed as effective. Participants described changes in children's speech production, which they associated with increased speech intelligibility. Children were described as more confident following the therapy, to have more successful conversations, with a wider range of partners in more environments, thereby increasing their social participation. The programme was viewed as acceptable, despite its intensity, due to the short term commitment and wider benefits for the child. Parents valued the organised structure and individualisation of the programme and inclusion in the therapy process.Conclusion: Families found the intervention acceptable and effective. A definitive trial of its clinical effectiveness is warranted.Implications for rehabilitationChildren with cerebral palsy who have dysarthria and their parents reported that intensive speech therapy focussing on creating a stronger voice and a steady speech rate increased the clarity of children's voice and the intelligibility of their speech.Therapy may have additional benefits for children's self-confidence and social participation.The programme of therapy comprising three sessions per week for six weeks was seen as manageable by families in view of the results achieved.

A critical exploration of professional jurisdictions and role boundaries in inter-professional end-of-life care in the community.

This article critically examines how professional boundaries and hierarchies influence how end-of-life care is managed and negotiated between health and social care professionals. Our findings suggest there is uncertainty and lack of clarity amongst health and social care professionals regarding whose responsibility it is to engage, and document, the wishes of patients who are dying, which can lead to ambiguity in treatment decisions. We go on to explore the potential role of a new electronic system, designed to facilitate information sharing across professional boundaries, in shaping and bridging professional boundaries in the delivery of end-of-life care. We highlight potential negative impacts that may arise when health and social care groups are permitted varying levels of access to the system, and how this may be seen to reflect the value placed on their role in end-of-life care.

Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System.

OBJECTIVES: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences. DESIGN: Qualitative study using interviews and focus groups. SETTING: Health and Social Care Services in the North of England. PARTICIPANTS: 71 participants, 62 health and social care professionals, 9 patients and family members. RESULTS: Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well-paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system. CONCLUSIONS: EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.