Explore the vast range of titles available.

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.

ObjectivesThis qualitative study seeks to answer the question: How do older adults use and perceive home adaptations, specifically grab rails designed to blend into the home environment and avoid overt associations with disability? The grab rails were provided by a large energy company. They were specifically designed to be discreet, stylish and have a dual purpose, with the aim of supporting healthy ageing through ageing in place.DesignA qualitative study using semistructured interviews, with thematic analysis.SettingInterviews were conducted predominantly via telephone calls, between 5 June 2023 and 14 August 2023.Participants33 participants took part in the study with a mean age of 64.2 years. Participants resided in the following regions across the UK: North East, North West, Yorkshire, East and West Midlands. Purposive sampling allowed diversity in gender, ethnicity and home tenure. The grab rails were installed at least 3 months prior to recruitment.ResultsMany participants reported that using the grab rails helped their independence and safety in daily life. The aesthetics of the grab rails were positively appraised, specifically because they had a notably different outward appearance to standard grab rails. Participants were aware that declining mobility can be stigmatising, and they felt the grab rails mitigated this by being discreet and enabling them to present a home which they felt would be accepted by wider society. Participants felt this protected their identity, as they wanted to appear independent to wider society. However, some participants were unaware that the grab rails had been designed with a duality of purpose or were apprehensive towards the functionality of these grab rails. This apprehension may have stemmed from the home adaptations being provided by a large energy provider, or because the discreet design of the grab rails made their intended purpose less overt.ConclusionsWhile home adaptations with a discreet and stylish aesthetic are valued by older people, our findings highlight that there are issues with commodifying home adaptations. Furthermore, we demonstrate the importance of addressing the social stigma associated with ageing-related home adaptations.

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.

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). 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. 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.

Background Intervening to modify frailty trajectories may be critical to maintain health and independence in later life. The Active Ageing Programme (AAP) is a 16-week community-based intervention for older people with mild frailty that combines physical activity and social interaction. The programme aims to positively impact resilience and wellbeing, changing the physical, mental and social factors that impact on frailty trajectories. We conducted a rapid qualitative study with the first cohort to understand the acceptability and feasibility of the AAP. Methods Purposive sampling was used to identify and recruit staff and participants involved in the AAP for semi-structured interviews. The topic guides covered experiences and perceptions of training and referral, delivery and participation in activities, and benefits and challenges. Data from 20 interviews were analysed using a reflexive thematic approach with inductive coding. The Theoretical Domains Framework prompted consideration of potential individual, social and environmental factors influencing changes in behaviour and practice. Results Sixteen AAP staff (10) and participants (6) completed interviews. Two themes were developed: combining motivating components; addressing what matters. The AAP brought together a number of components that supported its acceptability and successful implementation by motivating older people and staff and sustaining their engagement. These included the convenient and familiar location, the opportunity to improve physical health (participants) and to gain experience of an activity intervention, training and confidence (staff), and the variety of activities on offer. The programme was perceived to have potential to improve physical and mental health and increase the personal resources (e.g. knowledge, confidence, motivation) of those taking part. Areas identified as important for the AAP’s future sustainability and success were: tailoring recruitment practices; enhancing organisational communication; and strengthening support for participants to achieve long-term increased physical and social activity and resilience. Conclusions Our findings suggest that community-based physical and social activity interventions targeting frailty may be acceptable, feasible and useful. Further work is needed to investigate the impact of such programmes on health and service utilisation. Efforts should be targeted at improving the potential for long-term sustainability of programmes and their impacts.

Cognitive impairment is common in Parkinson’s disease (PD). However, the psychosocial impact of living and coping with PD and cognitive impairment in people with PD and their carers have not been explored. This paper draws on a qualitative study that explores the subjective impact of cognitive impairment on people with PD and their carers. Thirty-six one-to-one interviews were completed; people with PD were from three groups: normal cognition, mild cognitive impairment, and dementia. Data collection and analysis were iterative, and verbatim transcripts were analysed using thematic analysis. Themes were interpreted in consultation with coping and adaptation theory. The analysis revealed four main themes: threats to identity and role, predeath grief and feelings of loss in carers, success and challenges to coping in people with PD, and problem-focused coping and finding meaning in caring. Our data highlight how cognitive impairment can threaten an individual’s self-perception; the ostensible effects of cognitive impairment depended on the impact individual’s perceived cognitive impairment had on their daily lives. For carers, cognitive impairment had a greater emotional impact than the physical symptoms of PD. The discussion that developed around protective factors provides possible opportunities for future interventions, such as psychological therapies to improve successful adjustment.

IntroductionPeople living at home with dementia are often cared for by family members, especially those from minority ethnic groups. Many people living with dementia from minority ethnic communities face barriers to accessing formal care. However, there is a paucity of dementia research, which foregrounds diversity within minority ethnic populations. This study, conducted between July 2024 and August 2026, will explore the diverse care experiences of South Asian people living with dementia. Conducted across four sites (Newcastle, Nottingham, Birmingham and London), it aims to understand how inequalities related to ethnicity intersect with other factors (eg, gender, age and class) to shape the dementia care experiences of people living in South Asian communities and apply this learning to explore how public policy and care systems could be improved to reduce health and social inequalities.Methods and analysisIn Newcastle, ethnographic research will be undertaken with up to 20 people living with dementia (or with memory concerns) in South Asian communities for a period of 12 months. The lengthy research period will enable a deep understanding about how experiences change as dementia progresses over time. In Nottingham and Birmingham, semi-structured interviews and/or focus groups will be conducted with up to 30 people living with dementia (or with memory concerns) in South Asian communities. This will enhance the data generated via the ethnographic research. Analysis will follow the principles of reflexive thematic analysis and will involve identifying themes and synthesising and theorising the data. Following this, findings will be reflected upon in 4–6 task groups convened in London, Nottingham and Newcastle with practitioners from health and social care, voluntary organisations or faith groups involved in dementia care. Task groups will focus on developing practical goals based on the research findings.Ethics and disseminationEthical approval for this study has been granted by Newcastle University Faculty of Medical Sciences Ethics Committee (Reference: 2773/43721). Findings will be disseminated to academics, practitioners, policymakers and members of the public via a range of channels including conferences, peer-reviewed publications, lay reports, leaflets and non-written formats such as animated videos.

IntroductionNeovascular 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 analysisSingle-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 disseminationNHS 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.

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.

IntroductionThe 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 analysisTwo 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 disseminationThe 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.