Negotiating pace, focus and identities: Patient/public involvement/engagement in a palliative care study.

Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of 'academic' and 'PPIE' did not stand up to scrutiny, with an increasing blurring of boundaries as people's experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.

Occupational inequalities in volunteering participation: Using detailed data on jobs to explore the influence of habits and circumstances.

In this paper we present empirical results that show that detailed occupations have distinctive patterns of association with voluntary participation. We draw upon data from four secondary survey datasets from the UK (coverage 1972-2012). Occupations are shown to link to volunteering in a wide range of scenarios and in individual, household, and longitudinal contexts. We argue that these linkages provide insight into social inequalities in volunteering, and that they can help us to understand the relative influence of "circumstance" and "habits" in enabling or inhibiting voluntary participation.

Othering Older People's Housing: Gaming Ageing to Support Future-Planning.

The 'othering' of ageing is linked to an integrated process of ageism and hinders planning for the future for both individuals and practitioners delivering housing and health services. This paper aims to explore how creative interventions can help personalise, exchange knowledge and lead to system changes that tackle the 'othering' of ageing. The Designing Homes for Healthy Cognitive Ageing (DesHCA) project offers new and creative insights through an innovative methodology utilising 'serious games' with a co-produced tool called 'Our House' that provides insights into how to deliver housing for older people for ageing well in place. In a series of playtests with over 128 people throughout the UK, the findings show that serious games allow interaction, integration and understanding of how ageing affects people professionally and personally. The empirical evidence highlights that the game mechanisms allowed for a more in-depth and nuanced consideration of ageing in a safe and creative environment. These interactions and discussions enable individuals to personalise and project insights to combat the 'othering' of ageing. However, the solutions are restrained as overcoming the consequences of ageism is a societal challenge with multilayered solutions. The paper concludes that serious gaming encourages people to think differently about the concept of healthy ageing-both physically and cognitively-with the consideration of scalable and creative solutions to prepare for ageing in place.

Supporting care home residents in the last year of life through 'Needs Rounds': Development of a pre-implementation programme theory through a rapid collaborative online approach.

Background: Realist evaluation aims to address the knowledge to practice gap by explaining how an intervention is expected to work, as well as what is likely to impact upon the success of its implementation, by developing programme theories that link contexts, mechanisms and outcomes. Co-production approaches to the development of programme theories offer substantial benefits in addressing power relations, including and valuing different types of knowledge, and promoting buy-in from stakeholders while navigating the complex social systems in which innovations are embedded. This paper describes the co-production of an initial programme theory of how an evidence based intervention developed in Australia - called 'Palliative Care Needs Rounds' - might work in England and Scotland to support care home residents approaching their end of life. Methods: Using realist evaluation and iPARIHS (integrated Promoting Action on Research Implementation in Health Services) we sought to determine how contexts and mechanisms of change might shape implementation outcomes. Pre-intervention online interviews (n = 28) were conducted (February-April 2021), followed by four co-design online workshops with 43 participants (April-June 2021). The online interviews and workshops included a range of stakeholders, including care home staff, specialist palliative care staff, paramedics, general practitioners, and relatives of people living in care homes. Results: This methodology paper reports developments in realist evaluation and co-production methodologies, and how they were used to develop context, mechanisms, outcomes (CMOs) configurations, and chains of inference. The initial (pre-intervention) programme theory is used to illustrate this process. Two developments to iPARIHS are described. First, involving stakeholders in the collaborative co-design workshops created opportunities to commence facilitation. Second, we describe developing iPARIHS' innovation component, to include novel stakeholder interpretations, perceptions and anticipated use of the intervention as they participated in workshop discussions. Conclusions: This rapid and robust co-production methodology draws on interactive collaborative research practices (interviews, workshop discussions of data, illustrative vignettes and visual methods). These innovative and engaging methods can be packaged for online processes to develop, describe and interrogate the CMOs in order to co-produce a programme theory. These approaches also commence facilitation and innovation, and can be adopted in other implementation science and realist studies.

Cognitive impairment negatively impacts allied health service uptake: Investigating the association between health and service use.

There is widespread concern about the potential impact on health and social care services of the ageing population and long-term health conditions, such as dementia. To effectively plan services it is important to understand current need and use and identify gaps in provision. Using data from the Cognitive Function and Ageing Study Wales (CFAS Wales), we used logistic regression to model the relationship between health (self-rated health, cognitive impairment, and activities of daily living), and the use of health and care services. CFAS Wales is a longitudinal cohort study of people aged 65 years and over, in two areas in Wales, UK, over-sampling those aged 75 years and over. Participants (n = 3593) answered a wide range of health and lifestyle questions and completed a variety of cognitive and physical health assessments. Data from 3153 people from wave 1 and 1968 people from wave 2 were analysed. As anticipated we found poorer health, on some indicators, predicted greater service use, including social care, hospital, general practitioner, and nursing services. However, cognitive impairment did not predict greater service use, except for social care. Controlling for age, sex, socio-economic status, social connection indices and area environment, conversely we found lower reported uptake of allied health services by people with cognitive impairment. Further analysis showed that people with a cognitive impairment were less likely to report having a sight-check or seeing a dentist in the previous year, a finding replicated in wave 2. These differences were not explained by transportation issues. In contrast, we did not find a significant difference in reported uptake of hearing checks or physiotherapist use, with mixed evidence of differences in chiropodist visits. Not accessing these preventative services may not only exacerbate existing conditions but have further downstream negative consequences for health and well-being in people who are cognitively impaired.

Palliative and end-of-life care in care homes: protocol for codesigning and implementing an appropriate scalable model of Needs Rounds in the UK.

INTRODUCTION: Palliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called 'Palliative Care Needs Rounds' (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life. METHODS AND ANALYSIS: This implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4-6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents' quality of death and care home staff capability of adopting a palliative approach. ETHICS AND DISSEMINATION: Frenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds. REGISTRATION DETAILS: Registration details: ISRCTN15863801.

Dementia, home care and institutionalisation from hospitals in older people.

This study examines the relationship between dementia and institutionalisation directly after hospital discharges in older people and explores potential mediators of the association. Our analyses are based on linked Scottish administrative health and social care data, including 79,983 hospital stays for 43,753 patients aged 65 or over. Our results show that dementia patients are more likely to be discharged to care institutions compared with non-dementia patients (odds ratio = 17). Further analyses reveal that this can be partially explained by the fact that dementia patients are more likely to have injury-related admissions and long hospital stays. This indirect effect accounts for around 6% of the total effect. We also investigate the effect of receiving home care, finding no evidence that it influences the likelihood of institutionalisation from hospitals in older people.

Evaluation of four different small animal radiation plans on tumour and normal tissue dosimetry in a glioblastoma mouse model.

OBJECTIVE:: Small animal radiotherapy research platforms such as XStrahl's SARRP enable more precise irradiation of tumours and normal tissues in pre-clinical models of cancer. Using an orthotopic G7 glioblastoma xenograft model we studied the impact of four different radiotherapy plans on tumour and normal tissue dosimetry. METHODS:: Plans were created using four different approaches (single beam, parallel opposed pair, single plane arcs, couch rotation arcs) and dose volume histograms (DVH) for the tumour and the relevant organs at risk (OARs) (mouth, ipsilateral brain, contralateral brain, brain stem) were compared for a sample mouse subject. To evaluate the accuracy of delivery, treatment plans were recreated in solid-water phantoms and delivered to radiochromic film. RESULTS:: Favourable tumour dosimetry was achieved by all plans. DVH analysis showed that different plans could be used to spare specific OARs depending on the objectives of the study. The delivery accuracy of the various treatments was better than 2%/2mm (dose difference/distance to agreement) in terms of global γ analysis. CONCLUSION:: Small animal radiotherapy research platforms are an exciting addition to the pre-clinical research environment. Such systems improve the conformality of irradiation of tumours and OARs while maintaining a high degree of accuracy and enable investigators to optimise experiments in terms of tumour coverage and inclusion or exclusion of relevant OARs. ADVANCES IN KNOWLEDGE:: This study confirms the utility of the SARRP in terms of the accuracy of plan delivery, and informs decisions on treatment planning to optimise the clinical relevance and scientific value of experiments.

Pilot study protocol to inform a future longitudinal study of ageing using linked administrative data: Healthy AGeing in Scotland (HAGIS).

INTRODUCTION: Population ageing is a welcome testament to improvements in the social, economic and health circumstances over the life course. However, these successes necessitate that we understand more about the pathways of ageing to plan and cost our health and social care services, to support our ageing population to live healthier for longer and to make adequate provisions for retirement. Longitudinal studies of ageing facilitate such understanding in many countries around the world. Scotland presently does not have a longitudinal study of ageing, despite dramatic increases to its ageing population and its poor health record. Healthy AGeing in Scotland (HAGIS) constitutes the launch of Scotland's first comprehensive longitudinal study of ageing. METHODS: A sample of 1000 people aged 50+ years will be invited to take part in a household social survey. The innovative sampling procedure used administrative data to identify eligible households. Anonymised survey responses will be linked to administrative data. ETHICS AND DISSEMINATION: Ethics approval was obtained from the host institution for the study design and from the Public Benefits and Privacy Panel for administrative data linkage. Anonymised survey data will be deposited with the UK Data Service. A subset of survey data, harmonised with other global ageing studies, will be available via the Gateway to Global Aging platform. These data will enable powerful cross-country comparisons across the social, economic and health domains that will be relevant for national and international research.Research publications from the HAGIS team will be disseminated through journal articles and national and international conferences. The findings will support current and future research and policy debate on ageing populations.

Mortality in people with dementia, delirium, and unspecified cognitive impairment in the general hospital: prospective cohort study of 6,724 patients with 2 years follow-up.

PURPOSE: Cognitive impairment is common in older people admitted to hospital, but the outcomes are generally poorly understood, and previous research has shown inconsistent associations with mortality depending on the type of cognitive impairment examined and duration of follow-up. This study examines mortality in older people with any cognitive impairment during acute hospital admission. PATIENTS AND METHODS: Prospective cohort of 6,724 people aged ≥65 years with a structured cognitive assessment on acute admission were included in this study. Cognitive spectrum disorder (CSD) was defined as delirium alone, known dementia alone, delirium superimposed on known dementia, or unspecified cognitive impairment. Mortality associated with different types of CSD was examined using a non-proportional hazards model with 2-year follow-up. RESULTS: On admission, 35.4% of patients had CSD, of which 52.6% died within 2 years. After adjustment for demographics and comorbidity, delirium alone was associated with increased mortality in the 6 months post-admission (HR =1.45, 95% CI 1.28-1.65) and again after 1 year (HR =1.44, 95% CI 1.17-1.77). Patients with known dementia (alone or with superimposed delirium) had increased mortality only after 3 months from admission (HR =1.85, 95% CI 1.56-2.18 and HR =1.80, 95% CI 1.52-2.14) compared with patients with unspecified cognitive impairment after 6 months (HR =1.55, 95% CI 1.21-1.99). Similar but partially attenuated associations were seen after adjustment for functional ability. CONCLUSION: Mortality post-admission is high in older people with CSD. Immediate risk is highest in those with delirium, while dementia or unspecified cognitive impairment is associated with medium- to long-term risk. These findings suggest that individuals without dementia who develop delirium are more seriously ill (have required a larger acute insult in order to precipitate delirium) than those with pre-existing brain pathology (dementia). Further research to explain the mortality patterns observed is required in order to translate the findings into clinical care.

Spotlight on Scotland: Assets and Opportunities for Aging Research in a Shifting Sociopolitical Landscape.

Scotland is a small nation, yet it leads the field in key areas of aging research. With the creation of a devolved government with authority over health and social services, the country has witnessed practice and policy developments that offer distinctive opportunities for innovative research. With multidisciplinary groups of internationally recognized researchers, Scotland is able to take advantage of a unique set of opportunities for aging research: a well-profiled population brings opportunities in population data and linkage to understand people's interactions with health, social care, and other public services; while research on technology and telecare is a distinctive area where Scotland is recognized internationally for using technology to develop effective, high-quality and well-accepted services at relatively low financial cost. The paper also considers free personal care for older people and the national dementia strategy in Scotland. The potential to evaluate the impact of free personal care will provide valuable information for other global health and social care systems. Exploring the impact of the national dementia strategy is another unique area of research that can advance understanding in relation to quality of life and the development of services. The paper concludes that, while Scotland benefits from unique opportunities for progressive public policy and innovative aging research that will provide valuable lessons at the forefront of a globally aging population, the challenges associated with an aging population and increasing cultural diversity must be acknowledged and addressed to ensure that the vision of equality and social justice for all is realized.

Networks of informal caring: a mixed-methods approach.

Care for older people is a complex phenomenon, and is an area of pressing policy concern. Bringing together literature on care from social gerontology and economics, we report the findings of a mixed-methods project exploring networks of informal caring. Using quantitative data from the British Household Panel Survey (official survey of British households), together with qualitative interviews with older people and informal carers, we describe differences in formal care networks, and the factors and decision-making processes that have contributed to the formation of the networks. A network approach to care permits both quantitative and qualitative study, and the approach can be used to explore many important questions.