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Social care to assist with the activities of daily living is a necessity for many older people; while informal care provided by family members can be a first step to meeting care needs, formal care provided by professionals is often needed or preferred by older people and their families. In England, the number of older people paying for formal care is set to rise, driven by an ageing population and the limited resources of local authorities. Little is known about how older people and their families experience the potentially disruptive processes of deciding upon, searching for and implementing such care, including the financial implications. This paper explores accounts of seeking self-funded social care in England, told by older people and their families in 39 qualitative interviews. These accounts, which we call 'care chronicles', include stories about the emergence of care needs and informal care-giving, the search for formal care, including interacting with new systems and agencies, and getting formal (paid) care, either as the recipient or an involved family member. Stories are analysed through the lens of biographical disruption, and analysis demonstrates that such disruptions can occur for older people and their families across the entirety of the care chronicle. Needing, seeking and getting care all have the potential to cause practical and symbolic disruptions; moreover, these disruptions can be cumulative and cyclical, as attempts to resolve or minimise one disruption can lead to new ones. While the concept of biographical disruption is a mainstay in medical sociology, it is less frequently applied to issues relating to social care, and most often takes embodiment as a key focus. This study is novel in its application of the concept to experiences of seeking self-funded care, and in its introduction of the concept of 'care chronicles', which invite a longer and broader view of biographical disruptions in the lives of older people with care needs and their families. [ABSTRACT FROM AUTHOR]

Introduction Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). Methods In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019–March 2020), followed up after the first lockdown (July–October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Results Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. Discussion It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL. [ABSTRACT FROM AUTHOR]

Unnecessarily prolonged stays in hospitals can have negative impacts on patients and present avoidable costs to health and social care systems. This paper presents the qualitative findings of a multi‐methods study of the social care causes of delayed transfers of care (DTOC) for older people in England. The quantitative strand of this study found that DTOC are significantly affected by homecare supply. In this paper, we explore in depth how and why social care capacity factors lead to delays, from the perspectives of those working within the system. We examined the local transfer arrangements in six English local authority (LA) sites that were purposively sampled to include a range of DTOC performance and LA characteristics. Between March and December 2018, 52 professionals involved in arranging or facilitating discharge from hospitals in these sites provided qualitative data, primarily through semi‐structured interviews. Topics included discharge teams and processes, strategic issues and perceived causes of delays. The thematic analysis uncovered the nuances behind the causes of DTOC previously categorised broadly as 'provider capacity' and 'patient choice'. In particular, our analysis highlights the lack of fit between available provision and the needs of people leaving hospital (theme 1); workforce inconsistencies (theme 2) and a myth of patient choice (theme 3). We are now at a turning point in the development of policy to reduce DTOC in the English system, with the full implications of a new national discharge to assess programme yet to be seen. Our research shows the significance of the alignment of service capacity, including the type and location of provision, with the needs and preferences of those leaving hospital. As the new system becomes established, attendance to such nuances behind blockages in the system will be more important than ever. [ABSTRACT FROM AUTHOR]

Context: Being involved in one's care is prioritised within UK healthcare policy to improve care quality and safety. However, research suggests that many older people struggle with this. Design: We present focused ethnographic research exploring older peoples' involvement in healthcare from hospital to home. Results: We propose that being involved in care is a dynamic form of labour, which we call 'involvement work' (IW). In hospital, many patients 'entrust' IW to others; indeed, when desired, maintaining control, or being actively involved, was challenging. Patient and professionals' expectations, alongside hospital processes, promoted delegation; staff frequently did IW on patients' behalf. Many people wanted to resume IW postdischarge, but struggled because they were out of practice. Discussion: Preference and capacity for involvement was dynamic, fluctuating over time, according to context and resource accessibility. The challenges of resuming IW were frequently underestimated by patients and care providers, increasing dependence on others post‐discharge and negatively affecting peoples' sense and experience of (in)dependence. Conclusions: A balance needs to be struck between respecting peoples' desire/capacity for non‐involvement in hospital while recognising that 'delegating' IW can be detrimental. Increasing involvement will require patient and staff roles to be reframed, though this must be done acknowledging the limits of patient desire, capability,and resources. Hospital work should be (re)organised to maximise involvement where possible and desired. Patient/Public Contribution: Our Patient and Public Involvement and Engagement Panel contributed to research design, especially developing interview guides and patient‐facing documentation. Patients were key participants within the study; it is their experiences represented. [ABSTRACT FROM AUTHOR]

Older people in England who pay for social care from their own funds ('self-funders') receive little help in seeking and arranging care compared to older people funded by their local council. This suggests an implicit assumption that people funded by local councils need help to manage their care whereas self-funders do not. This article reports findings from a scoping review of published evidence from England, Scotland and Wales on the skills that older people need, and the help they get, to seek, arrange or manage use of social care, and how this help affects outcomes. Searches undertaken in October 2018 resulted in the inclusion of thirty-six empirical papers and seven reviews. Thematic analysis identified the importance of everyday life and specific business skills, and personal attributes including objectivity when evaluating options. The review identified two significant gaps in the evidence: first, how help in seeking and arranging care compensated for lack of, or complemented existing, skills; and secondly, how outcomes for people receiving help in arranging care compared with those not receiving help. The article concludes that a tailored approach to supporting older people arrange and manage care, irrespective of funding, should be considered. [ABSTRACT FROM AUTHOR]

Delayed transfers of care (DTOC), often unhelpfully referred to as 'bed blocking', has become a byword for waste and inefficiency in healthcare systems throughout the world. An estimated 2.7 million bed days are occupied each year in England by older people no longer in need of acute treatment, estimated to cost £820 million (2014/15) in inpatient care. Policy and media attention have often been drawn to this narrative of financial waste, resulting in policy setting that directly targets the level of DTOC, but has done little to put patient health first. These figures and policies portray a misleading image of the delays as primarily of concern in terms of their financial burden on acute hospital care, with little consideration given to the quantification on patient health or wider societal impacts. In spite of the multi-factorial decision-making process that occurs for each patient discharge, current evaluation frameworks and national policy setting fail to reflect the complexity of the process. In this commentary, we interrogate the current approach to the quantification of the DTOC impact and explore how policies and evaluation methods can do more to reflect the true impact of the delays. [ABSTRACT FROM AUTHOR]

This paper considers the experiences of older self‐funders in England in the context of policies promoting choice and control. Self‐funders are people who are not state‐funded; they pay for social care from their own resources. Choice and control have been operationalized through personal budgets, based on the assumption that managing resources enhances ability to access appropriate care and support. This paper uses data from 40 qualitative interviews with self‐funders and their relatives, and 19 with professionals. It explores the impact of the financial and social capital that self‐funders are assumed to have and asks how older self‐funders experience choice and control. The study found that older self‐funders drew on personal experiences, family, and friends for information; were reluctant to spend their wealth on care due to competing priorities; and felt they had more control over the timing of decisions than people who were state‐funded. Personal wealth appears to be perceived differently to funds "gifted" to people through cash for care schemes. [ABSTRACT FROM AUTHOR]

Background: Current models of patient‐enacted involvement do not capture the nuanced dynamic and interactional nature of involvement in care. This is important for the development of flexible interventions that can support patients to 'reach‐in' to complex health‐care systems. Objective: To develop a dynamic and interactional model of patient‐enacted involvement in care. Search strategy: Electronic search strategy run in five databases and adapted to run in an Internet search engine supplemented with searching of reference lists and forward citations. Inclusion criteria: Qualitative empirical published reports of older people's experiences of care transitions from hospital to home. Data extraction and synthesis: Reported findings meeting our definition of involvement in care initially coded into an existing framework. Progression from deductive to inductive coding leads to the development of a new framework and thereafter a model representing changing states of involvement. Main results: Patients and caregivers occupy and move through multiple states of involvement in response to perceived interactions with health‐care professionals as they attempt to resolve health‐ and well‐being‐related goals. 'Non‐involvement', 'information‐acting', 'challenging and chasing' and 'autonomous‐acting' were the main states of involvement. Feeling uninvolved as a consequence of perceived exclusion leads patients to act autonomously, creating the potential to cause harm. Discussion and conclusion: The model suggests that involvement is highly challenging for older people during care transitions. Going forward, interventions which seek to support patient involvement should attempt to address the dynamic states of involvement and their mediating factors. [ABSTRACT FROM AUTHOR]