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There has been an increasing acknowledgement in the UK of the importance of recognising frailty as a condition that leaves older people vulnerable to dramatic, sudden changes in health triggered by seemingly small events. In policy, the approach to managing frailty is often an emphasis on staying well with limited consideration to frailty as an end-of-life phase. Meanwhile, discharge from hospital continues to be complex. Overstretched acute hospitals are juxtaposed with community and social services that struggle to keep up with the demand of those being discharged and the labelling of older people as "bed blockers" at the centre of delayed discharges. This paper reports a study underpinned by constructivist grounded theory methodology, with the aim of exploring the experiences and perceptions of stakeholders. Semistructured interviews were conducted with 57 participants including patients, their informal carer(s), community hospital staff, community health professionals, and care home managers. The core category of "the drive to discharge conveyor belt" was derived from data analysis. A significant finding of this study was that of the carer, their burden, and their intrinsic role in facilitating discharge, filling in gaps in services, coordinating services, and enabling the patient to stay at home, with little consideration of their choices or autonomy. The "drive to discharge" impacts older people, their informal carers, and health professional. This study suggests how they may be supported, through an ethical lens. [ABSTRACT FROM AUTHOR]

This paper reports findings from a national, qualitative study in England that investigated if young adult carers services are facilitating young people's transitions to adulthood, including considering a future beyond caring. Semi-structured, online interviews were conducted in 2022 with a purposive sample of managers or lead workers of eleven young adult carers services in England. We discuss the consideration given in assessments to young people's caring preferences and the availability of support to facilitate them to relinquish their role, if they so wished. The majority of young adult carers services gave young people the opportunity to express their views on this issue. Although the Care Act 2014 aimed to provide choice over caring in adulthood to young adult carers, this was not matched by the necessary service provision to facilitate their preferences. A new national carers strategy is urgently required to ensure that young people, particularly women, have a credible choice over their future lives. [ABSTRACT FROM AUTHOR]

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

Technology‐dependent children are a sub‐population of seriously ill children with life‐limiting conditions who are being cared for at home by their families. Although home‐based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto‐driven photo‐elicitation interviews conducted between August 2017 and June 2018 with 12 parents (10 mothers and 2 fathers) who have a technology‐dependent child (aged 5–25 years) living in England, Scotland and Wales and David Seamon's five concepts of at‐homeness (appropriation, at‐easeness, regeneration, rootedness and warmth) as a conceptual framework, this paper addresses how parents' experienced home adaptations. Thematic analysis generated a meta‐theme of 'Home needs to be a home for all family members' and the three key themes: (1) 'You just get told' and 'you're not involved'; (2) It's just the 'cheapest', 'quickest', 'short‐term' approach; (3) Having 'control' and 'thinking things through.' The need to involve parents in decision‐making about adaptations that are made to their home (family‐informed design) is clear, not only from a cost‐saving perspective for the state, but for creating an aesthetic and functional home that optimises health, well‐being and feelings of at‐homeness for the entire family. [ABSTRACT FROM AUTHOR]

Individuals who experience a traumatic injury or an acute illness are often reliant on initial healthcare assessment and support from a pre‐hospital emergency medical service (EMS). These community‐based support models perform a vital role in the provision of life‐saving support, but research indicates that the availability, accessibility and resources of EMS are not equivalent in rural and urban areas, and there has been little recognition of the issues facing rural EMS provision outside of the USA, Europe and Australia. The purpose of the current study was to examine the lived experiences of Saudi Arabian EMS personnel, defined as emergency medical technicians, paramedics and local station managers. A semi‐structured interview approach was used to collect data from 20 interviewees (10 each with rural and urban personnel) in the Riyadh region of the Kingdom of Saudi Arabia. This methodology was used to identify the key issues that these staff face in their day‐to‐day work practice and ascertain factors that may lead to service delivery issues in rural and urban areas. Data analyses identified three thematic categories impacting EMS delivery; two of these, Personnel Factors and Patient Factors, are the focus of this paper. The participants noted a number of key issues, including a lack of appropriate local training and limited resources in rural areas, as well as general areas of concern regarding the wider EMS staff demographic makeup and poor public awareness about the exact role of the EMS. Three key recommendations arising from this study include specialised training and ongoing accessible education for rural EMS staff to allow for better support for patients; consideration of supplementing the current EMS with additional external specialist staff; and the development and implementation of national public education programmes focusing on the role of the EMS within the community. [ABSTRACT FROM AUTHOR]

Although healthy life expectancy is projected to be increasing among older people in Ghana, a high proportion and number of older people will live with functional disability, warranting their need for long‐term care. We explored the expressions used by older people to describe their needs and preference of care and support. Using the descriptive qualitative approach, 14 older people were engaged via semi‐structured interviews, and the data were analysed thematically. The study found that older people desired a decent accommodation, preferential healthcare, adequate nutrition, and an opportunity to interact with their peers at social functions. A provision of sufficient financial assistance, adequate healthcare, the periodic organisation of social and group events for older people, and the availability of home care and support could help older people address these needs. The paper reveals the need for interventional research on how a model incorporating social, health and environmental factors even during a pandemic can address older people's varying needs. [ABSTRACT FROM AUTHOR]

Making Every Contact Count (MECC) is a national, long‐term public health strategy in England. It supports public‐facing workers to use opportunities during routine contacts to enable healthy lifestyle changes. This paper reports the findings from an external evaluation of voluntary and community sector (VCS) delivery of MECC in the North East of England, which focused on engaging under‐represented client groups. The study aimed to (a) Establish if (and how) MECC had impacted the workforce, including changes to staff knowledge, confidence and behaviour; (b) Identify benefits, challenges and unintended consequences; and (c) Explore outcomes for service users. A multi‐stage qualitative design focused on understanding both process and outcomes. The study utilised three data collection methods, including a journey mapping workshop (n = 20), semi‐structured interviews with delivery leads, VCS workers and volunteers who had accessed MECC training (n = 11), and focus group discussions with clients (n = 22). The findings illustrated positive early outcomes, including improvements in self‐reported staff knowledge and confidence as well as emerging examples of organisational culture shift and individual behaviour change. Alongside this, the data provided a rich picture of barriers and challenges which are examined at different levels—national programme, local programme, VCS sector, partner organisation, worker and client. The research highlights clear successes of the VCS delivery model. However, it is presented as a 'double‐edged sword,' in light of associated challenges such as sector‐level funding uncertainty and accessibility of MECC resources to diverse client groups. The discussion considers issues related to the measurement and attribution of behaviour change outcomes for brief interventions, as well as fidelity, legacy and long‐term sustainability challenges. The recommendations call for system‐level analysis and comparison of different MECC implementation models, to improve our understanding of challenges, opportunities and programme reach for behaviour change intervention programmes—particularly in relation to seldom‐heard client groups. [ABSTRACT FROM AUTHOR]

This study explores the experiences of professionals who worked with care home residents with impaired mental capacity in England and Wales during the COVID‐19 pandemic. It explores (i) how competing risks were balanced and (ii) how the Mental Capacity Act (MCA) functioned in care homes under pandemic conditions, with particular focus on its associated Deprivations of Liberty Safeguards (DoLS) and Independent Mental Capacity Advocacy (IMCA) systems. Between March and May 2021, we held an online survey and five focus groups aimed at professionals who worked in or with care homes during the pandemic. The study explored issues pertaining to residents with impaired mental capacity, alongside several other topics on which we report elsewhere. For this paper, we filtered data to only include responses from 'capacity professionals'. The resulting sample comprised 120 (out of 266) survey participants and 18 (out of 22) focus group participants. We performed manifest content analysis on the filtered data and found that (1) participants reported a 'massive discrepancy' between the ways different care homes balanced the risk of COVID‐19 infection with the risks associated with severe restrictions. (2) Some suggested this was due to vague guidance, as well as care home type and size. Participants told us the pandemic (3) obstructed smooth operation of statutory safeguards designed to protect residents' human rights and (4) resulted in confusion about the remit of the MCA during a public health crisis. Our findings raise concerns about the impact of pandemic‐related measures upon care home residents with impaired mental capacity. We urge further exploration and analysis of (a) the variability and inconsistency of restrictions applied at care homes, (b) the strain placed on key safeguards associated with the MCA, (c) uncertainty about the remit of the MCA during a public health crisis and (d) the human rights implications hereof. [ABSTRACT FROM AUTHOR]

There is a global recognition that the homeless in different clusters are isolated social groups. They are highly susceptible to loneliness and related psycho‐physical health outcomes owing to their less supportive and fragmented social networks. The conditions are worse in the case of chronic or lifetime homelessness. Beyond this popular notion, other critical perspectives are also there. This paper attempts to analyse the differences in inter‐personal social networks between the chronic and the non‐chronic homeless groups at a railway junction in India. The data have been collected through structured and semi‐structured questionnaires from 28 homeless people (15 chronically and 13 non‐chronically homeless) of Burdwan Railway Junction – a vital railway junction of West Bengal, India. The chronically homeless group displays more supportive and compact inter‐personal networks in this study than the non‐chronic homeless group. Living in the station area for a long time, they have formed a society of their own. Barring some psychological stress and social abuse, the livelihood scenario of these people is relatively stress‐free and social networks relations are more intensive and supportive. Considering the outcomes, instead of the housing‐first approach of rehabilitation, we favour the development of community shelters with minimum basic amenities close to their present location. [ABSTRACT FROM AUTHOR]

Informal caregiving for a person living with glioma can be both rewarding and multidimensionally challenging, given the potential for debilitating symptoms, cognitive impairment or personality changes, as early as diagnosis. There is growing evidence that, due to the demands of care, experiences and feelings of loneliness and isolation among informal caregivers are widespread, and opportunities for quality or meaningful social connectedness are lacking. While considerable research has quantified the causes and effects of loneliness and isolation in informal care contexts, the lived experience of loneliness has received relatively little attention. The aim of this study was to better understand the everyday experiences of a group of home‐based informal caregivers of people living with glioma in Queensland, Australia. Drawing on in‐depth interviews with 32 informal caregivers, purposively sampled, and recruited through a tertiary hospital, in this paper, we explore how the various experiences, demands, and social and relational dynamics in/of informal care (re)produce forms of isolation and loneliness. Using the framework approach to thematic analysis, we derived four themes: (a) the 'need' to be near the care recipient, and the implications for caregiver mobility; (b) the strong sense of responsibility for care, and the virtues of 'good' caring; (c) experiences of loneliness in the company of others and (d) postponement of social connection and minimising the self. The findings, we argue, are reflective of broader social and moral norms and expectations within experiences of home‐based informal care. [ABSTRACT FROM AUTHOR]

Citizenship is gaining currency in health and social care internationally as a way of making sense of the lived experiences of people with major life disruptions who face exclusion, marginalisation and discrimination, but the concept is often contested, poorly defined and understood. This paper charts the development of an empirical model of citizenship within Scotland, UK. A mixed‐method, community‐based participatory research approach using 10 focus groups (n = 77), concept‐mapping exercises (n = 45) and statement clarity and relevant ratings (n = 242) was used to develop a model of citizenship that is grounded in the lived experience of participants, which is absent from current conceptualisations of citizenship. Multidimensional scaling and hierarchical cluster analysis revealed five core domains emerging from our work: 'building relationships', 'autonomy and acceptance', 'access to services and supports', 'shared values and social roles' and 'civic rights and responsibilities' representing the personal meanings of citizenship for participants. We argue that the value of this model is that it is draws upon the personal understandings and experiences of participants who emphasised the 'banal ordinariness' of its core elements. We suggest that the model makes an original contribution by clearly illustrating the practical applicability of citizenship as a concept; thus, enhancing existing theories of citizenship. Our model highlights the interplay between the relational and structural aspects of citizenship and acknowledges the barriers that marginalised groups face in claiming their citizenship rights. It offers a call to action for policy makers and practitioners to set goals that contribute to the social inclusion of those who have experienced major life disruptions. [ABSTRACT FROM AUTHOR]

Carers of people with dementia can experience reduced health and well‐being, but little is known about how best to support them. There is some evidence to suggest that case management may improve outcomes for carers but less evidence about the features of case management services that can effectively support carers of people with dementia. Admiral Nursing operates a case management approach staffed by specialist nurses and is the only service of its kind in the United Kingdom dedicated to helping people with dementia and their carers. This paper reports qualitative findings from a mixed methods study of Admiral Nursing. For the qualitative strand of the project, data were collected in focus groups and in‐depth interviews with carers of people with dementia (n = 35) and analysed thematically using the framework approach. The aim of this analysis was to understand differences between the experiences of the carers in our sample with and without Admiral Nursing, applying Freeman's model of continuity of care (Freeman et al., Continuity of care, 2000). Participants who had received Admiral Nursing were recruited from two geographical locations and carers without experience of this service were recruited from two different areas. We found that carers in our sample felt 'supported' in circumstances where they received an ongoing service from an Admiral Nurse or other professional with expertise in dementia who was able to develop a meaningful relationship with them over time. We conclude that ongoing support, expertise in dementia and a meaningful relationship are key features of relationship continuity common in carers' reports of feeling supported. Specialist nurses are well placed to provide this continuity. [ABSTRACT FROM AUTHOR]

This grounded theory study sought to explore how older adults' experience the transition from living at home to a care home with a specific focus on the latter part of the first year of the move. The study was carried out within a large Health Trust in the UK between August 2017 and May 2019. Purposive sampling was used in the initial stages of data collection. Thereafter and consistent with grounded theory methodology, theoretical sampling was employed to undertake semi‐structured interviews with 17 individuals from eight care homes between 5 and 12 months after the move. This paper reports five key categories which were: (a) The lasting effect of first Impressions 'They helped me make my mind up' (b) On a Journey 'I just take it one day at a time', (c) Staying connected and feeling 'at home' 'You get something good out of it you know...you get hope'. (d) Managing loss and grief 'It was important for me to say cheerio to the house' and (e) Caring relationships 'I didn't realise that I was lonely until I had company'. Together these five categories formed the basis of the core category 'The Primacy of 'Home' which participants identified as a place they would like to feel valued, nurtured and have a sense of belonging. This study identifies that it is important for individual preferences and expectations to be managed from the outset of the move. Individuals and families need to be supported to have honest and caring conversations to promote acceptance and adaptation to living in a care home while continuing to embrace the heart of 'home'. Key recommendations from this study include the need to raise awareness of the significance of the ongoing psychological and emotional well‐being needs of older people which should be considered in policy directives and clinical practice. [ABSTRACT FROM AUTHOR]

Informal carers provide the majority of care to older Australians and play an essential role in assisting older people with complex care needs to remain living in their own homes. As such, carers are increasingly faced with systemic responsibilities, including coordinating services across multifaceted health and aged care systems and negotiating treatment and supports. The aim of this study was to explore how systemic complexity and associated work is experienced by carers of older adults and what personal capacities carers draw on in managing the systemic work. A descriptive phenomenological approach guided the research. Semistructured interviews were conducted with 16 carers of community‐dwelling older adults with complex care needs recruited through a local health service. Giorgi's phenomenological data analysis methods (1997) was utilised for the data analysis. Two main themes were derived from the analysis: Becoming part of the caring system and Mastering the caring system. The findings indicate that the majority of carers perceived the work of interacting with multiple systems and services as a burden and an onerous obligation. Furthermore, change in the health or social circumstances of the older adult amplified differences in the nature of the systemic work and concomitantly revealed differences in carers' capacities. This paper reveals that the caring system is in some sense disposed to create disparities, as carers' specific capacities were integral to mastering the systemic work. An understanding of informal care work that supports older people to live in the community can assist health care professionals and service providers to better identify carer requirements and assess carer capacity to manage the work. [ABSTRACT FROM AUTHOR]

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi‐structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio‐recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations. [ABSTRACT FROM AUTHOR]

Despite the benefits of utilising community‐based care services (CBS) for people with dementia and their caregiver being well established, people with dementia and caregivers use fewer services in comparison to other people in need of care. While societal, cultural and logistical factors effecting caregiver use of CBS are frequently studied, research of internal emotional barriers, mental limitations created by one's own self that prevents open communication of thoughts and feelings, and their effect on CBS use is limited. This paper explores internal emotional barriers on caregivers' use of CBS within the Irish Healthcare System. Professional Healthcare Providers were also interviewed as a preliminary indicator of their awareness of these internal emotional barriers and their impact on caregivers' use of CBS. Using interpretive description methodology, interviews with 20 caregivers and fourteen dementia professional healthcare providers were transcribed and a thematic analysis methodology applied to illuminate themes/patterns within participants' subjective perceptions of caregivers emotional barriers to using CBS. Four themes emerge: reluctance to question general practitioner (GP) authority; embarrassment during level of care requirement reviews; sense of obligation to provide all care; and fear of stigma. Caregivers interviewed were reluctant to communicate concerns with professional healthcare providers (PHPs), thereby reducing the PHP's awareness of these barriers and delaying/preventing use of CBS. As key gatekeepers within the care pathway, GPs should address the uneven power dynamic with the caregiver through user‐centred models of care, which actively encourage open dialogue, and receive training to identify the indicative behaviours of internal emotional barriers and empower the caregiver to communicate their feelings/concerns directly. [ABSTRACT FROM AUTHOR]