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The last three census data highlighted that UK Bangladeshi communities have the worst health outcomes. This includes a higher risk of type two diabetes and heart diseases; both are risk factors for developing vascular dementia. However, little is known about Bangladeshi community members' understandings of dementia, including cultural myths. This paper focuses on the cultural myths, superstitions, and stigma surrounding dementia in an English Bangladeshi community from the direct experiences of people living with dementia, their caregivers, and the views of dementia service providers/stakeholders. This qualitative research was undertaken with three distinct participant groups using semistructured interviews (n = 25), who were recruited from community settings. The first and second participant groups explored the experiences of people with dementia (n = 10) and their family caregivers (n = 10). The third group examined stakeholders'/service providers' views (n = 5). Interviews were recorded digitally and transcribed verbatim. Findings were reached using an interpretive approach, emphasising the sense people make in their own lives and experiences and how they frame and understand dementia. The study revealed that participants with dementia and their caregivers have "alternative" knowledge about dementia and do not necessarily understand dementia in a Westernised scientific/biomedical context. Misconceptions about dementia and belief in various myths and superstitions can lead people to go to spiritual healers or practice traditional remedies rather than to their GPs, delaying their dementia diagnosis. This paper concludes that there is a lack of awareness among the Bangladeshi participants and a need for targeted awareness about dementia to help dispel cultural myths and combat the stigma surrounding dementia within the Bangladeshi community. [ABSTRACT FROM AUTHOR]

This paper reports the findings of a thematic narrative review of peer‐reviewed articles exploring innovation in UK independent homecare services published between January 2009–August 2021. Our analysis of 15 papers reveals four broad innovation types: personalised funding, operational models, workforce development and assistive technology. We conclude that research focused on innovation in independent homecare offers important insights into the positive and negative outcomes of different types of innovation for providers, care workers and people receiving care. There are, however, also areas which are neglected and need further elaboration, including more robust evidence of outcomes and clearer articulation of innovation processes. [ABSTRACT FROM AUTHOR]

Paediatric Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a disabling condition. Schools play a key role in adolescents' experiences with managing ME/CFS. However, little is known about the experiences of adolescents with ME/CFS (and their families) in schools. This paper is an incidental qualitative study, which combines data from two independent ME/CFS studies: study 1 researched ethnic minority adolescents with ME/CFS; study 2 explored Acceptance and Commitment Therapy for adolescents with ME/CFS who had not recovered after one year. Participants included: adolescents with ME/CFS; their families; and medical professionals (ME/CFS specialists and non‐specialists). Adolescents, their families, and ME/CFS medical professionals were recruited from a UK specialist paediatric ME/CFS service. Non‐ME/CFS medical professionals were recruited from the same region. Semi‐structured qualitative interviews and focus groups were undertaken. Participants' views on schools from each study were combined and thematic analysis was used to identify themes. Fifteen adolescents with ME/CFS (11–17 years old), sixteen family members, and ten medical professionals (GPs, school nurses and ME/CFS specialists) were interviewed. Four key themes were found: (1) adolescents identified school was important for aiding ME/CFS recovery, especially educationally and socially; (2) families described varying levels of support from schools and local authorities with help managing ME/CFS – some described significant practical and emotional difficulties to accessing education, whereas others recounted examples of positive supportive strategies, particularly when teachers had previous experience or knowledge of ME/CFS; (3) parents thought three‐way communication between schools, healthcare and families could improve support; (4) participants felt schools were an appropriate place for knowledge building and raising awareness of ME/CFS amongst teachers and pupils, to aid improved supportive measures. In conclusion, this paper provides rich data that highlights the importance of education and the realistic fears and hurdles for adolescents with ME/CFS remaining engaged in education and the impact on their future. Some families described positive strategies in school, which were viewed as helpful to manage ME/CFS in the classroom. These strategies could be implemented alongside knowledge building initiatives and improved communication between healthcare and education. There is a need to further investigate useful strategies and determine how teachers can be best supported in implementing them. [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]

In the United Kingdom (UK), link worker social prescribing has emerged as an option to improve long‐term condition management and address primary care patients' non‐medical needs by linking patients with community‐based activities and support. Social prescribing is a complex, heterogenous intervention, and there is currently no taxonomy of components to guide its implementation and evaluation. This study aimed to identify and categorise the components of link worker social prescribing schemes in the United Kingdom. A scoping review of peer‐reviewed literature was conducted. Six databases were used to identify papers that met inclusion criteria. Eligible articles were original research studies in the United Kingdom describing interventions that included (1) initial referral of adults with chronic physical health conditions and/or unmet social needs from primary care to a link worker or equivalent role, (2) consultation with a link worker or equivalent role and (3) referral to a community‐based or government service. Of the 1078 articles identified, 32 met study eligibility criteria, representing 22 social prescribing schemes. We drew from the template for intervention description and replication (TIDieR) to identify, organise and report intervention components. We found wide variations in geography, target populations and intervention components such as activities and procedures conducted by primary care staff and link workers, organisational and staffing configurations and use of tools and financing approaches to facilitate adoption. Intervention components are summarised into a taxonomy to guide future research, policy and practice efforts in addition to supporting standardised intervention reporting. [ABSTRACT FROM AUTHOR]

Despite longstanding efforts at de‐institutionalisation, around 2000 people with learning disabilities and/or autistic people in England currently live in hospital settings, amidst reports of protracted stays, limited progress towards living more ordinary lives and scandals of abuse and poor care. Yet, there is relatively little research on why people with learning disabilities and/or autistic people are delayed in hospitals, and what exists has significant limitations. In particular, previous studies have rarely talked directly to people with learning disabilities and/or autistic people, their families and frontline staff about their experiences of living or working in such settings, the barriers to discharge and what would help more people to lead chosen lifestyles. This paper presents the findings of a structured literature review conducted between January and March 2021 on delayed discharges of people with learning disabilities in long‐stay hospital settings. It investigated: the proportion of people with learning disabilities delayed in long‐stay hospital settings, the suggested reasons for these delays and the proposed solutions. The literature reported delays for 11%–80% of inpatients in different settings. The reasons reported are related either to particular characteristics of the person (which we find problematic) or limitations of the system supporting them. However, delays were defined and reported inconsistently, reasons usually lacked depth and detail, and the majority of included studies did not engage directly with the people living in long‐stay settings, their families or frontline staff. Without listening to these voices, genuine solutions will be difficult to find. [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]

Intimate partner homicides are often situated within the context of domestic abuse, and although less prevalent than domestic abuse, there have been several multi‐agency approaches to understanding the risk for these fatal crimes. Domestic Homicide Reviews (DHRs) were introduced in 2011 to provide information to help with assessing such risk. This paper aims to analyse DHRs in England and Wales to investigate/determine risk factors for domestic homicide following intimate partner abuse. All publicly available DHRs published between July 2011 and November 2020 where the victim and perpetrator were or had been intimate partners (N = 263) were retrieved from Community Safety Partnership websites in England and Wales. A quantitative design was used to extract data from DHRs, and descriptive and inferential statistics were generated by SPSS 26. Findings identified risk factors relating to domestic abuse, including stalking, separation, and the victim being in a new relationship. Sociodemographic risk factors included higher levels of deprivation, lower income and higher barriers to housing and services. This highlights the role of both individual and sociodemographic factors in domestic homicides, and particularly the need for greater socioeconomic security for victims of domestic abuse. In conclusion, though much of the data is in line with previous research, our analysis highlights the pivotal role of regional poverty, with comfortable socioeconomic conditions offering protection against intimate partner homicides. This research suggests important directions for future research and makes a valuable contribution to a more in‐depth understanding of the relationship between domestic abuse and intimate partner homicide. [ABSTRACT FROM AUTHOR]

Domestic Homicide Reviews (DHRs) are a statutory requirement in England and Wales, conducted when somebody aged 16 and over dies from violence, abuse or neglect by a relative, intimate partner or member of the same household. While key aims of DHRs are to identify recommendations and lessons learned to eventually prevent further domestic homicides, there is limited evidence globally regarding the extent to which these are followed up or make a difference. This paper explores the barriers and facilitators to the conduct and impact of DHRs to enhance their learning potential. It is based on nineteen qualitative interviews with professionals involved in the DHR process across five Safeguarding Boards in Wales and fourteen Community Safety Partnerships in the North‐West of England, UK. Findings are presented thematically under four section headings: upskilling and democratising the review process; family and friends' involvement; negotiating organisational blame to foster learning; and actioning and auditing recommendations. It is suggested that organisational learning cannot be achieved without accepting organisational responsibility, which could be interpreted as blame. The role and skills of the Chair are perceived as key to ensure a safe, evidence‐based, transparent and learning‐focused DHR process. Developing and actioning recommendations may challenge longstanding prejudices. Promoting the role of families/survivor networks and professionals on an equal footing would support a more democratic process. Learning could be enhanced by thematising recommendations and proactively using lessons from one area to inform another. Participants called for appropriate central regulation and accountability to support the action of recommendations. [ABSTRACT FROM AUTHOR]

UK South Asian women are less likely to engage with cancer screening than the general population and present later with more advanced disease. Tailored interventions are needed to address barriers to these women accessing screening services. 'Wise up to cancer' is a community‐based health intervention designed to increase cancer screening uptake. It has been implemented within the general population and a study was undertaken to implement it within a South Asian female community. This paper explores one workstream of the wider 'Wise up to Cancer' study which involved working out how best to adapt the baseline questionnaire (the first part of the intervention) for South Asian women in an inner‐city location in Northern England. The aim of this workstream was to evaluate what worked well when implementing the adapted 'Wise up to Cancer' with South Asian women. In 2018, we conducted qualitative semi‐structured interviews and focus group with 14 key stakeholders; women who had received the intervention, health champions and community workers to explore their perspectives on how the adapted intervention worked within a South Asian female community. The interviews were audio recorded or (notes taken), data were transcribed verbatim and the dataset was thematically analysed. We found that training peers as community health champions to deliver the intervention to address language and cultural barriers increased participant engagement, was beneficial for the peers and supported participants who revealed difficult social issues they may not have otherwise discussed. Accessing women in established community groups, following planned activities such as English language classes worked but flexibility was needed to meet individual women's needs. Further research is needed to explore the impact of adapting 'Wise up to Cancer' for this community in terms of engaging with cancer screening. [ABSTRACT FROM AUTHOR]

The mental health benefits of physical activity and exercise are well‐documented and asylum seekers who may have poor mental health could benefit from undertaking recommended levels of physical activity or exercise. Digital mobile applications are increasingly seen as feasible to precipitate behaviour change and could be a means to encourage asylum seekers to increase their levels of physical activity and exercise. This paper reports on a study that aimed to assess the feasibility of asylum seekers using the digital animation as a tool to change behaviour and increase their physical activity and exercise levels. A feasibility study underpinned by the principles of the COM‐B behaviour change model was undertaken in West Yorkshire, UK, in 2019. Thirty participants were purposively recruited and interviewed. Peer interpreters were used as necessary. Deductive thematic analysis was undertaken to analyse the data. Overall, participants were positive about the feasibility of asylum seekers using the application as a behaviour change intervention. All expressed the view that it was easy to follow and would motivate them to increase their physical activity levels. Participants identified facilitators to this as the simplicity of the key messages, the cultural neutrality of the graphics and the availability of the mobile application in different languages. Identified barriers related to the dialect and accents in the translations and the over‐simplicity of the application. This study has identified that a targeted digital animation intervention could help asylum seekers change their behaviour and hence improve their health and well‐being. In designing such interventions, however, researchers must strongly consider co‐design from an early stage as this is an important way to ensure that the development of an intervention is fit for purpose for different groups. [ABSTRACT FROM AUTHOR]

This paper reports findings from a qualitative study into the immediate impact of social distancing measures on the lives of lesbian, gay, bisexual and trans (LGBT+) older people (≥60 years) living in the UK during the first lockdown of the COVID‐19 pandemic. It draws on in‐depth interviews with 17 older people and 6 key informants from LGBT+ community‐based organisations, exploring the strategies used to manage their situations, how they responded and adapted to key challenges. Five themes emerged related to: (1) risk factors for LGBT+ older people and organisations, including specific findings on trans experiences; (2) care practices in LGBT+ lives; (3) strengths and benefits of networking (4) politicisation of ageing issues and their relevance to LGBT+ communities and (5) learning from communication and provision in a virtual world. The findings illuminate adaptability and many strengths in relation to affective equality and reciprocal love, care and support among LGBT+ older people. It is vital UK that the government recognises and addresses the needs and concerns of LGBT+ older people during emergencies. [ABSTRACT FROM AUTHOR]

This paper reports and discusses the weekly Clapping for Carers – described as 'front‐line heroes' that took place across the United Kingdom during the first national lockdown of the coronavirus pandemic. Data are drawn from a UK‐wide online survey of health and social care workers, completed in May to July 2020. The survey received 3,425 responses of which 2,541 were analysed; free‐text comments were categorised. One question asked specifically: 'Do you think the "Clap for Carers" was a helpful response from the public?', and 815 comments were provided. Responses were extracted from these 815 free‐text comments and categorised as follows: unequivocally Yes, predominantly Yes, mixed feelings, predominantly No and unequivocally No. Most comments revealed mixed feelings about the helpfulness of Clapping with only a minority being entirely supportive. The free‐text comments offer some explanations for these views with many feeling that Clapping distracted from the severity of the pandemic and the inadequate resources. The free‐text comments reveal workforce concerns that the support demonstrated for the frontline workforce in Clapping might be transitory and that it may not translate into workforce improvements and political commitment to further funding of health and social care. Some saw the value of Clapping as illustrative of community cohesion. There was little mention of Clapping for heroes, and where it was the notion of heroism was rejected. The demonstration of public support in Clapping for Carers may have directly benefitted the public, but only indirectly the workforce. Future recruitment data may help discern if public support has translated into a desire to join the workforce. [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]

Dementia affects majority of older residents in nursing homes and physiotherapists are regularly involved with this population. However, little is known about the role of physiotherapists who treat residents with dementia in nursing homes. The aim of this paper was to report on an interpretivist qualitative exploration of the perceptions of both the providers of and referrers to domiciliary physiotherapy for residents with dementia in nursing homes in London. In 2015, we conducted semi‐structured interviews with 10 purposively sampled participants – two were providers of physiotherapy for residents with dementia in nursing homes, five were referrers to these providers and three occupied dual roles. A thematic analysis of the verbatim transcripts identified three main themes. First were perceptions of a multifaceted but unclear role, focused on both conventional 'physical' physiotherapy interventions and specialist care, the latter being reliant on knowledge and confidence that physiotherapists did not always feel they possessed. Second were the stated challenges to the role, including the focus and organisation of the nursing home setting, with perceived lack of emphasis on rehabilitation; the progressive and demanding nature of dementia itself; a lack of continuity of nursing home and visiting health professional staff with associated need to entrust physiotherapy intervention to multiple others and the final challenge was the difficulty measuring impact. Third, despite the challenges, enablers of the role were experienced, namely collaborative working and positive previous experiences of referrers. Joining these themes were underpinning concepts of complexity and uncertainty in relation to the physiotherapy role in this setting. This paper highlights a need for enhanced collaborative working in clinical practice, enabled at organisational level, to help address some of the uncertainties expressed around the physiotherapists' role with residents with dementia in nursing homes and thereby enable improvements to processes and outcomes of their interventions. [ABSTRACT FROM AUTHOR]

This paper investigates the relationship between social participation and subjective health. Using individual‐level data from the British Household Panel Survey, we show that being an active member of a social or sport organisation increases self‐rated physical and psychological health. For men, the benefits of social interaction work primarily via physical pathways, while women report a more psychosocial channel. We separate the main results by occupation and document some heterogeneity. Manual workers find more physical and psychological relief via social involvement, whereas non‐manual workers are more likely to take relief from sport participation. Interestingly, as the number of associations in which the individual is active increases, the incremental increase in social benefits diminishes. Our findings point to the importance of promoting social and sport activities in health communication and policy making. [ABSTRACT FROM AUTHOR]

In the UK support for older people living in residential care to undertake meaningful activities is provided by Activities Co‐ordinators. There is also a growing trend for care home providers to invite arts organisations into care settings to deliver a range of arts and cultural activities. These arts and cultural activities are delivered by Arts Facilitators, who are distinct from Activities Co‐ordinators because their practice is specifically in an art form. This paper presents findings from the Creative Journeys research project which focused on exploring the role of participatory arts within residential care home in developing and maintaining social relationships between residents and staff. One of the objectives of the research was to identify factors which facilitated or hindered the delivery and impact of the activities. Data collection methods included observations and semi‐structured interviews with residents and staff. Thematic analysis was conducted on the qualitative data. It was found that a key factor in the successful delivery of the groups was the working relationship between the Arts Facilitators and the Activities Co‐ordinators. This relationship is explored and presented under three main themes: the collaborative process, practicalities and preparation and the approach of the Arts Facilitator. The Activities Co‐ordinators' role is an under‐researched area, but they play a central role in supporting visiting arts organisations to deliver the sessions and in enabling residents to attend and engage with meaningful activities. [ABSTRACT FROM AUTHOR]

There has been a strong policy emphasis over the past decade on optimising patient‐centred care and reducing general practitioners' (GPs') workload by extending community pharmacy services and collaboration between pharmacists and GPs. Our aim was to review current evidence of pharmacists' and GPs' views of extended community pharmacy services and pharmacists' roles in the United Kingdom (UK). A systematic review was undertaken looking at UK studies investigating pharmacists' and/or GPs' views of community pharmacy services or roles from 2005 to 2017. A range of databases were searched including EMBASE, PubMed, Scopus, Web of Science, International Pharmaceutical Abstracts (IPA), PsycINFO, Science Direct and The Cumulative Index to Nursing and Allied Health Literature (CINAHL). In addition, reference lists of included studies were screened and grey literature was searched. Following the application of inclusion/exclusion criteria, the quality of papers was critically analysed, findings were extracted into a grid and subjected to narrative synthesis following thematic analysis. The search strategy yielded a total of 4,066 unique papers from which 60 were included. Forty‐seven papers covered pharmacists' views, nine combined both pharmacists' and GPs' views and four covered GPs' views. Study designs included interviews (n = 31, 52%), questionnaire surveys (n = 17, 28%) and focus groups (n = 7, 12%). Three main themes emerged from the data: "attitudes towards services/roles", "community pharmacy organisations" and "external influences". Pharmacists and GPs perceived a number of barriers to successful implementation and integration of pharmacy services. Moreover, collaboration between pharmacists and GPs remains poor despite the introduction of extended services. Overall, extending community pharmacy services require quality‐driven incentives and joint working between community pharmacists and GPs to achieve better integration within the patient's primary care pathway. [ABSTRACT FROM AUTHOR]

Cognitive Impairment (CI) screening is recommended for those engaged in harmful levels of alcohol use. However, there is a lack of evidence on implementation. This paper explores the barriers and facilitators to CI screening experienced across a service specifically for older drinkers. The findings draw on data gathered as part of an evaluation of a multilevel programme to reduce alcohol‐related harm in adults aged 50 and over in five demonstration areas across the United Kingdom. It is based on qualitative interviews and focus groups with 14 service providers and 22 service users. Findings are presented thematically under the section headings: acceptability of screening, interpretation and making sense of screening and treatment options. It is suggested that engagement with CI screening is most likely when its fit with agency culture and its purpose is clear; where service providers have the technical skills to administer and discuss the results of screening with service users; and where those undertaking screening have had the opportunity to reflect on their own experience of being screened. Engagement with CI screening is also most likely where specific intervention pathways and engagement practices can be accessed to respond to assessed need. [ABSTRACT FROM AUTHOR]

Abstract: The third sector has played a significant role internationally in the delivery of adult social care services for many years. Its contribution to care co‐ordination activities for older people, however, in England and elsewhere, is relatively unknown. A scoping review was therefore conducted to ascertain the character of the literature, the nature and extent of third sector care co‐ordination activity, and to identify evidence gaps. It was undertaken between autumn 2013 and summer 2014 and updated with additional searches in 2016. Electronic and manual searches of international literature using distinct terms for different approaches to care co‐ordination were undertaken. From a total of 835 papers, 26 met inclusion criteria. Data were organised in relation to care co‐ordination approaches, types of third sector organisation and care recipients. Papers were predominantly from the UK and published this century. Key findings included that: a minority of literature focused specifically on older people and that those doing so described only one care co‐ordination approach; third sector services tended to be associated with independence and person‐centred practice; and working with the statutory sector, a prerequisite of care co‐ordination, was challenging and required a range of features to be in place to support effective partnerships. Strengths and weaknesses of care co‐ordination practice in the third sector according to key stakeholder groups were also highlighted. Areas for future research included the need for: a specific focus on older people's experiences; an investigation of workforce issues; detailed examination of third sector practices, outcomes and costs; interactions with the statutory sector; and an examination of quality assurance systems and their appropriateness to third sector practice. The main implication of the findings is a need to nurture variety within the third sector in order to provide older people and other adults with the range of service options desired. [ABSTRACT FROM AUTHOR]

Loneliness is a global public health concern linked to a range of negative health outcomes (Cacioppo & Cacioppo, 2018. The Lancet. 391(10119), 426). Internationally, this has led to the development of a number of interventions, but these are rarely implemented or evaluated on a large scale. This paper is one of the first of its kind to describe elements of an evaluation of a large‐scale national social prescribing scheme to reduce loneliness, deploying individual link workers to signpost people to community activities. Reporting on findings from interviews with staff (n = 25 of which 6 were repeat interviews) and volunteers (n = 9) between October 2017 and December 2018 in localities across the United Kingdom. We reflect on the complexities of the link worker role, the challenges of service delivery and the importance of community infrastructure. There was evidence that highly skilled link workers who had developed positive relationships with providers and service‐users were key to the success of the intervention. As well as providing an effective liaison and signposting function, successful link workers tailored the national programme to local need to proactively address specific gaps in existing service provision. For social prescribing services to be successful and sustainable, commissioners must consider additional funding of community infrastructure. [ABSTRACT FROM AUTHOR]

Estimates suggest that 15% of children in the United Kingdom have been exposed to at least one form of domestic violence (DV) during their childhood, with more than 3% having witnessed an incident during the past year. This exposure increases the risk of children suffering both short‐term and long‐term impacts, including effects on their behaviour, social development, physical and mental health, educational attainment and quality of life. In addition, children living in environments where there is DV are at higher risk of maltreatment. Adult relatives and friends of the family often observe the experiences of children in situations of DV, and have the potential to shed light in a way that children and survivors may struggle to articulate, or be reluctant to acknowledge or disclose. Such accounts are largely absent from existing research, and yet bring a perspective which can broaden our understanding of the impact that DV has on children. This paper reports a secondary analysis of qualitative data collected during 21 in‐depth interviews with people across the United Kingdom who were a friend or family member of a woman experiencing DV. An inductive thematic analysis was undertaken and the themes generated were as follows: 'the context of DV: a chaotic and unpredictable home life'; 'the roles children assume within households where there is DV including: witness of, victim of and conduit of violence and abuse',; 'the impacts of DV on children'; and 'children's coping and resilience'. The implications of these findings are discussed using a basic needs model lens. [ABSTRACT FROM AUTHOR]

Extra care housing (ECH) has been lauded as an innovative model of housing with care for older people that promotes and supports independent living. The study used a qualitative design to explore how care is delivered in four extra care settings in England over 20 months during 2016–2017. This paper reports findings from semi‐structured interviews with 20 care workers and seven managers. The article argues that, despite being heralded as a new model, care workers in ECH face similar organisational pressures as those working in more conventional settings and, in turn, the care which they are able to provide to residents mimics traditional forms of care. [ABSTRACT FROM AUTHOR]

The use of non‐medical referral, community referral or social prescribing interventions has been proposed as a cost‐effective alternative to help those with long‐term conditions manage their illness and improve health and well‐being. However, the evidence base for social prescribing currently lags considerably behind practice. In this paper, we explore what is known about whether different methods of social prescribing referral and supported uptake do (or do not) work. Supported by an Expert Advisory Group, we conducted a realist review in two phases. The first identified evidence specifically relating to social prescribing in order to develop programme theories in the form of 'if‐then' statements, articulating how social prescribing models are expected to work. In the second phase, we aimed to clarify these processes and include broader evidence to better explain the proposed mechanisms. The first phase resulted in 109 studies contributing to the synthesis, and the second phase 34. We generated 40 statements relating to organising principles of how the referral takes place (Enrolment), is accepted (Engagement), and completing an activity (Adherence). Six of these statements were prioritised using web‐based nominal group technique by our Expert Group. Studies indicate that patients are more likely to enrol if they believe the social prescription will be of benefit, the referral is presented in an acceptable way that matches their needs and expectations, and concerns elicited and addressed appropriately by the referrer. Patients are more likely to engage if the activity is both accessible and transit to the first session supported. Adherence to activity programmes can be impacted through having an activity leader who is skilled and knowledgeable or through changes in the patient's conditions or symptoms. However, the evidence base is not sufficiently developed methodologically for us to make any general inferences about effectiveness of particular models or approaches. [ABSTRACT FROM AUTHOR]

The health and well-being consequences of social isolation and loneliness in old age are increasingly being recognised. The purpose of this scoping review was to take stock of the available evidence and to highlight gaps and areas for future research. We searched nine databases for empirical papers investigating the impact of social isolation and/or loneliness on a range of health outcomes in old age. Our search, conducted between July and September 2013 yielded 11,736 articles, of which 128 items from 15 countries were included in the scoping review. Papers were reviewed, with a focus on the definitions and measurements of the two concepts, associations and causal mechanisms, differences across population groups and interventions. The evidence is largely US-focused, and loneliness is more researched than social isolation. A recent trend is the investigation of the comparative effects of social isolation and loneliness. Depression and cardiovascular health are the most often researched outcomes, followed by well-being. Almost all (but two) studies found a detrimental effect of isolation or loneliness on health. However, causal links and mechanisms are difficult to demonstrate, and further investigation is warranted. We found a paucity of research focusing on at-risk sub-groups and in the area of interventions. Future research should aim to better link the evidence on the risk factors for loneliness and social isolation and the evidence on their impact on health. [ABSTRACT FROM AUTHOR]

Asset-based approaches seek to identify and mobilise the personal, social and organisational resources available to communities. Asset mapping is a recognised method of gathering an inventory of neighbourhood assets and is underpinned by a fundamentally different logic to traditional needs assessments. The aim of this paper is to explore how asset mapping might be used as a tool for health improvement. It reports on a qualitative evaluation of a pilot asset mapping project carried out in two economically disadvantaged neighbourhoods in Sheffield, UK. The project involved community health champions working with two community organisations to identify assets linked to the health and wellbeing of their neighbourhoods. The evaluation was undertaken in 2012 after mapping activities had been completed. A qualitative design, using theory of change methodology, was used to explore assumptions between activities, mechanisms and outcomes. Semi structured interviews were undertaken with a purposive sample of 11 stakeholders including champions, community staff and strategic partners. Thematic analysis was used and themes were identified on the process of asset mapping, the role of champions and the early outcomes for neighbourhoods and services. Findings showed that asset mapping was developmental and understandings grew as participatory activities were planned and implemented. The role of the champions was limited by numbers involved, nonetheless meaningful engagement occurred with residents which led to personal and social resources being identified. Most early outcomes were focused on the lead community organisations. There was less evidence of results feeding into wider planning processes because of the requirements for more quantifiable information. The paper discusses the importance of relational aspects of asset mapping both within communities and between communities and services. The conclusions are that it is insufficient to switch from the logic of needs to assets without building asset mapping as part of a broader planning process. [ABSTRACT FROM AUTHOR]

This paper recounts the process of undertaking a randomised controlled trial which was designed to examine the effectiveness of an intervention for socially isolated older people aged 75 years and over. It describes the reasons for early cessation of the study and raises the implications of this outcome for policy, practice and research. The intervention under investigation was designed to alleviate loneliness and foster companionship. It involves participants being linked with a small group of others through a teleconferencing system with each group being facilitated by trained volunteers. There was a requirement to recruit and train a minimum of 30 and a maximum of 60 volunteers over 1 year to facilitate 20 friendship groups to meet the number of older people required to be recruited to the study. Problems with recruiting and retaining the volunteer workforce by the voluntary sector organisation, who were commissioned to do so, led to the study closing even though older people were recruited in sufficient numbers. The paper draws upon analysis of various data sources from the study to identify the potential reasons. The discussion raises considerations regarding the extent of infrastructure required to deliver community services to vulnerable user groups at scale, identifies some of the issues that need to be addressed if such volunteer-initiated services are to be successful and informs future research programmes in this area. [ABSTRACT FROM AUTHOR]

This paper considers the lack of choice in sheltered housing and residential/nursing care provision for older lesbian, gay and bisexual ( LGB) individuals in the UK. While there is a growing body of knowledge about their concerns about current options, the precise kinds of alternative provision which older LGB individuals would prefer are not yet well understood. This article reports on a qualitative study conducted in 2012 which aimed to explore ageing, gender and sexuality from an equalities perspective. The study deployed semi-structured interviews with 60 older LGB individuals living in the UK, and used a thematic analysis approach to the data. This paper describes one aspect of the data, relating to participants' concerns about health and social care provision. The analysis identified several key themes underpinning older LGB individuals' concerns about mainstream sheltered accommodation and residential care, namely: lack of visibility, risky visibility, unequal openness and compulsory co-occupation of care spaces. It highlights the significance of gender for housing/care preferences, with a greater proportion of older LGB women wanting gender- and/or sexuality-specific provision compared with men. The social policy, equality and human rights implications of these findings are considered. [ABSTRACT FROM AUTHOR]

This study explores the impact of mental capacity in relation to breast screening for women with intellectual disabilities in the UK. Participation in breast screening is considerably lower for women with intellectual disabilities compared to the general population. Barriers to screening include poor mobility and behavioural difficulties. There is currently no research which primarily explores the relationship between mental capacity and breast screening for this group of individuals. This paper presents the results of a cross‐sectional survey of 131 women with intellectual disabilities supported by eight Social Care Providers within England and Wales. The data were collected between January 2017 and July 2017. The current research explores the decision‐making process surrounding breast screening, considering the impact of associated risk factors during this process. Participants completed a specifically created survey addressing the aforementioned issues. The results indicated that women who lacked capacity, were less likely to engage in breast screening. It was also demonstrated that the process outlined in the Mental Capacity Act (MCA; 2005) was not always followed; women were not routinely assessed if there were doubts regarding their decision‐making ability around breast screening and best interest meetings (BIM) were not always held if the person lacked capacity. In order to be able to generalise the current findings, further research is needed to gain a broader understanding of how professionals make decisions around breast screening for women with intellectual disabilities in case the individuals are unable to decide this independently. [ABSTRACT FROM AUTHOR]

National policy initiatives are faced with challenges in their partnership development and sustainability. The National Dementia Strategy for England recommended Dementia Adviser (DA) and Peer Support Network (PSN) services and 40 demonstration sites were established. In this paper, we report on the national evaluation of these demonstration sites, with specific reference to aspects of organisational development. The research used a mixed-methods design with three main strands: (i) activity and outcome monitoring; (ii) organisational surveys and collaborative discussion; (iii) in-depth case studies in eight of the 40 sites. This paper focuses primarily on three rounds of organisational surveys distributed to all 40 demonstration sites over a period of 21 months and interviews in the case studies. Data identify the significance of infrastructure within immediate services as well as the position of services within the external infrastructure of the wider health and social care landscape. Partnership - both internally and externally - was key to establishing and sustaining services that flourished. When working well, DAs and PSNs acted as a link between services and people with dementia at the same time as filling gaps in existing support, providing information, advice and interpersonal support that was tailored to individual needs and circumstances. In conclusion, to achieve the full potential and sustainability of services requires them to be in an organisational space that allows them to work in partnership and collaboration with other services, and that values their distinct knowledge of their communities. [ABSTRACT FROM AUTHOR]

Abstract: Recent UK welfare reforms have been less successful than expected by the Government in supporting unemployed people with long‐term illness into work. Frontline workers remain a core element of the new welfare‐to‐work machinery, but operate within a changed organisational and policy landscape. These changes raise important questions regarding whether and how claimants’ health‐related barriers to work are considered. This paper examines the UK welfare‐to‐work frontline worker's role with claimants who have long‐term illness. Fieldwork observations in three not‐for‐profit employment support services and semi‐structured interviews with 29 participants (claimants, frontline workers, healthcare professionals and managers) were conducted between 2011 and 2012. Participant observation of the wider welfare‐to‐work arena was initiated in 2009 and continued until 2013. A qualitative methodology drawing on ethnographic principles was adopted. Thematic analysis of the data was carried out. The findings show that the frontline worker plays a key role in assessing and addressing claimants’ health‐related barriers to work. Two important health‐related role dimensions were identified: a health promoter role which involved giving health promotional advice to claimants about their general health; and a health monitor role which involved observing and questioning claimants about their general health. Frontline workers’ practice approaches were shaped by organisational and individual factors. Integration between the National Health Service and employment support services was limited, and the findings suggested improvements were required to ensure an adequate response to claimants’ health‐related needs to support their journey into work. [ABSTRACT FROM AUTHOR]

Abstract: There have been substantial achievements in legislative and human rights for lesbian, gay, bisexual and transgender (LGBT) older people and their visibility in health and social care has equally increased. These appear to have surpassed the ability of care services to meet their needs given documented concerns about the accessibility, inclusiveness and safety of care services particularly institutionalised care. This requires systemic change not easy to operationalise. This paper describes an action research initiative where six care homes belonging to a national care provider, collaborated to assess and develop their services with the support of local LGBT “Community Advisors” and academic partners. Framed within Rogers’ (2003) change management framework and combined with a participatory leadership approach, a programme of intervention was implemented comprising structured activities around seven key areas thought to promote LGBT inclusion. A formal evaluation was conducted involving 35 pre‐ and post‐intervention qualitative interviews with 18 people (community advisors; care home managers and senior managers). The findings are presented across three key themes (1) starting points on the journey; (2) challenges encountered along the journey (organisational and interpersonal); and (3) making change happen; opportunities, initiatives and gains. We make recommendations on the value of a programme approach for achieving tangible outcomes that demonstrate increased inclusion for older LGBT people living in long‐term care settings. [ABSTRACT FROM AUTHOR]

Increasing attention has focused on the role of joint commissioning in health and social care policy and practice in England. This paper provides an empirical examination of the three discourses of joint commissioning developed from an interpretative analysis of documents by Dickinson et al. (2013; BMC Health Services Research, 13) and applied to data from our study exploring the role of knowledge in commissioning in England. Based on interviews with 92 participants undertaken between 2011 and 2013, our analysis confirms that the three discourses of prevention or empowerment or efficiency are used by professionals from across health and social care organisations to frame their experiences of joint commissioning. However, contrary to Dickinson et al., we also demonstrate that commissioners and other stakeholders combine and trade off these different discourses in unexpected ways. Moreover, at sites where the service user experience was central to the commissioning process (joint commissioning as empowerment), a greater sense of agreement about commissioning decisions appeared to have been established even when the other discourses were also in play. [ABSTRACT FROM AUTHOR]

Current demographic, policy and management changes are a challenge to hospices to develop their volunteering practices. The study upon which this paper is based aimed to explore good practice in volunteer involvement and identify ways of improving care through developing volunteering. The project consisted of a narrative literature review; a survey of volunteer managers; and organisational case studies selected through purposive diversity sampling criteria. A total of 205 staff, volunteers, patients and relatives were interviewed across 11 sites in England in 2012. This article focuses on one of the findings - the place that volunteers occupy between the hospice and the community beyond its walls. External changes and pressures in society were impacting on volunteer management, but were viewed as requiring a careful balancing act to retain the 'spirit' of the hospice philosophy. Honouring the developmental history of the hospice was vital to many respondents, but viewed less positively by those who wished to modernise. Hospices tend to be somewhat secluded organisations in Britain, and external links and networks were mostly within the end-of-life care arena, with few referring to the wider volunteering and community fields. Volunteers were seen as an informal and symbolic 'link' to the local community, both in terms of their 'normalising' roles in the hospice and as providing a two-way flow of information with the external environment where knowledge of hospice activities remains poor. The diversity of the community is not fully represented among hospice volunteers. A few hospices had deliberately tried to forge stronger interfaces with their localities, but these ventures were often controversial. The evidence suggests that there is substantial scope for hospices to develop the strategic aspects of volunteering through greater community engagement and involvement and by increasing diversity and exploiting volunteers' 'boundary' position more systematically to educate, recruit and raise awareness. [ABSTRACT FROM AUTHOR]

Since 2005, health trainers and other lay public health workers ( LPHWs) have been increasingly active in the UK. Although elsewhere in the world LPHWs are expected to come from the communities within which they work and know that their knowledge is valued, neither is the case for LPHWs in the UK. This study sought to discover the lay knowledge of health trainers and other LPHWs, aiming to ascertain how this knowledge might more effectively be utilised within UK public health services. This paper describes a participatory and ethnographic case study research project undertaken on an anonymised urban estate in North East England. Findings were generated by a range of means including by participant observation and semi-structured interviews. Seven LPHWs took part, as did 32 other community members. This study found that the lay health knowledge of an individual UK LPHW is determined primarily by his or her position within, or in relation to, the community within which he or she works. Insider LPHWs possess an embodied knowledge and incomer LPHWs possess an experiential knowledge which, although different from one another, are essentially interpersonal in nature. Lay health knowledge can take different forms, and different LPHWs can provide different forms of lay health knowledge. Public health structures and services in the UK should make better use of all forms of LPHW knowledge, and should seek from LPHWs training on how to engage the most 'hard-to-reach' or 'difficult-to-engage' groups. Services recruiting LPHWs should decide whether they are seeking embodied insider LPHW knowledge, experiential incomer LPHW knowledge or a mixture of both. [ABSTRACT FROM AUTHOR]

Shared Lives (adult placement) is a model of community-based support where an adult who needs support and/or accommodation moves into or regularly visits the home of an approved Shared Lives carer, after they have been matched for compatibility. It is an established but small service which has been used mainly by people with learning disabilities but which has the potential to offer an alternative to traditional services for some older people. However, there is little research on the outcomes for older users of Shared Lives. This paper presents findings from a survey of 150 older people using Shared Lives support across 10 Shared Lives schemes in England, which took place between June 2013 and January 2014. The aim was to identify outcomes for older users of Shared Lives and compare these to outcomes for older users of other social care services. In the absence of an ideal study design involving randomised allocation, statistical matching was used to generate a comparison group from the Adult Social Care Survey from 2011/12, with 121 cases matched to 121 Shared Lives cases. The main outcome measures were Social Care-Related Quality of Life (measured by the ASCOT) and overall quality of life. Findings indicated that Shared Lives can deliver good outcomes for older people, particularly for overall quality of life. In comparison to the matched group of older people using other forms of support, there was some evidence that Shared Lives may deliver better outcomes in some aspects of quality of life. Limitations to the research mean, however, that more work is needed to fully understand the role Shared Lives could play in supporting older people. [ABSTRACT FROM AUTHOR]

Personal health budgets ( PHBs) in England have been viewed as a vehicle for developing a personalised patient-based strategy within the substance misuse care pathway. In 2009, the Department of Health announced a 3-year pilot programme of PHBs to explore opportunities offered by this new initiative across a number of long-term health conditions, and commissioned an independent evaluation to run alongside as well as a separate study involving two pilot sites that were implementing PHBs within the substance misuse service. The study included a quantitative and qualitative strand. The qualitative strand involved 20 semi-structured interviews among organisational representatives at two time points (10 at each time point) between 2011 and 2012 which are the focus for this current paper. Overall, organisational representatives believed that PHBs had a positive impact on budget-holders with a drug and/or alcohol misuse problem, their families and the health and social care system. However, a number of concerns were discussed, many of which seemed to stem from the initial change management process during the early implementation stage of the pilot programme. This study provides guidance on how to implement and offer PHBs within the substance misuse care pathway: individuals potentially would benefit from receiving their PHB post-detox rather than at a crisis point; PHBs have the potential to improve the link to after-care services, and direct payments can provide greater choice and control, but sufficient protocols are required. [ABSTRACT FROM AUTHOR]

Many older people in Britain spend Christmas day alone. The Christmas period may be especially difficult for older people who are socially isolated, living with dementia or who have physical impairments, and may feel particularly marginalised at this time of year. This paper draws on evaluative research findings from a community Christmas event held in December 2014 at the University of Salford for older people and their carers who would be on their own on Christmas day. A multi-method approach was employed, seven guests took part in semi-structured interviews to explore their experiences and perceptions of the event, seven staff and student volunteers participated in a group interview to explore and discuss their participation in the event. Data collection took place during April and May 2015. Interview transcripts were subjected to thematic analysis. Three overarching themes were identified from the interviews: 'reasons for participants attending the event', 'a different Christmas day: the impact on guests and volunteers', and 'learning, planning and moving forwards'. The findings illustrate that a range of people participated in the Christmas day event for a variety of reasons. The event itself had a positive impact, including the shared experience of social belonging, for all involved. There are tangible longer term benefits as a result of the event, such as ongoing contact between participants and the development of supportive networks in the local community. [ABSTRACT FROM AUTHOR]

This article reports findings from a scoping review of the literature on good practice in social care for disabled adults and older people with severe and complex needs. Scoping reviews differ from systematic reviews, in that they aim to rapidly map relevant literature across an area of interest. This review formed part of a larger study to identify social care service models with characteristics desired by people with severe and complex needs and scope the evidence of effectiveness. Systematic database searches were conducted for literature published between January 1997 and February 2011 on good practice in UK social care services for three exemplar groups: young adults with life-limiting conditions; adults who had suffered a brain injury or spinal injury and had severe or complex needs; and older people with dementia and complex needs. Five thousand and ninety-eight potentially relevant records were identified through electronic searching and 51 by hand. Eighty-six papers were selected for inclusion, from which 29 studies of specific services were identified. However, only four of these evaluated a service model against a comparison group and only six reported any evidence of costs. Thirty-five papers advocated person-centred support for people with complex needs, but no well-supported evaluation evidence was found in favour of any particular approach to delivering this. The strongest evaluation evidence indicated the effectiveness of a multidisciplinary specialist team for young adults; intensive case management for older people with advanced dementia; a specialist social worker with a budget for domiciliary care working with psycho-geriatric inpatients; and interprofessional training for community mental health professionals. The dearth of robust evaluation evidence identified through this review points to an urgent need for more rigorous evaluation of models of social care for disabled adults and older people with severe and complex needs. [ABSTRACT FROM AUTHOR]

Unscheduled care (UC) refers to non-routine face-to-face care, such as accident and emergency care, out-of-hours care, or walk-in centres. Current health service policy aims to reduce its use. Unscheduled care is common in people with long-term conditions such as diabetes, asthma, chronic obstructive pulmonary disease and coronary heart disease. By reviewing qualitative research literature, we aimed to understand the breadth of psychosocial and other influences on UC use in people with long-term conditions. Few qualitative papers specifically address UC in patients in these disease groups. Therefore, our literature search also included qualitative research that explored factors potentially relevant to UC use, including attitudes to healthcare use in general. By searching Medline, Embase, Psycinfo and Cinahl from inception to 2011, we identified 42 papers, published since 1984, describing relevant original research and took a meta-ethnographic approach in reviewing them. The review was conducted between Spring 2009 and April 2011, with a further search in December 2011. Most papers reported on asthma ( n = 13) or on multiple or unspecified conditions ( n = 12). The most common methods reported were interviews ( n = 33) and focus groups ( n = 13), and analyses were generally descriptive. Theoretical and ethical background was rarely explicit, but the implicit starting point was generally the 'problem' of UC, and health-care, use in general, decontextualised from the lives of the patients using it. Patients' use of UC emerged as understandable, rational responses to pressing clinical need in situations in which patients thought it the only option. This belief reflected the value that they had learned to attach to UC versus routine care through previous experiences. For socially or economically marginalised patients, UC offered access to clinical or social care that was otherwise unavailable to them. [ABSTRACT FROM AUTHOR]

Despite the widespread use of Health Care Support Workers (HCSWs) in providing palliative and end-of-life care, there is little information available about their contributions towards supporting patients who want to be cared for at home or to die at home. Between January and April 2011, a systematic review was conducted to address two questions: (i) What particular tasks/roles do HCSWs perform when caring for people at the end of life and their families to comply with their desire to remain at home?; (ii) What are the challenges and supporting factors that influence HCSWs' ability to provide palliative and end-of-life care in the community? Databases searched for relevant articles published between 1990 until April 2011 included CINAHL, EMBASE, PsychINFO, British Nursing Index, Web of Science, Medline and ASSIA. In total, 1695 papers were identified and their titles and abstracts were read. Ten papers met the eligibility criteria of the study. After the methodological quality of the studies was appraised, nine papers were included in the review. Judgements regarding eligibility and quality were undertaken independently by the authors. The findings indicate that HCSWs invest a great deal of their time on emotional and social support as well as on assisting in the provision of personal care. They are also involved in providing care for the dying, respite care for family members and offer domestic support. Although it is important to acknowledge the many positive aspects that HCSWs provide, the findings suggest three challenges in the HCSWs role: emotional attachment, role ambiguity and inadequate training. Support factors such as informal peer grief-support groups, sense of cohesiveness among HCSWs and task orientation enabled HCSWs to overcome these challenges. To conclude, induction and training programmes, a defined period of preceptorship, appropriate support, supervision and clearly defined role boundaries may be helpful in reducing the challenges identified in HCSWs' roles. [ABSTRACT FROM AUTHOR]

The vulnerability of deafblind people is considered axiomatic; they are seen not only as a vulnerable group but also as one of the most vulnerable. This paper aims to synthesise existing knowledge to determine what is known about such vulnerability. A comprehensive literature search was undertaken between April 2013 and May 2014. The review method was informed by systematic review principles. An approach based on a 'hierarchy of evidence' would have reduced the amount of literature reviewed significantly, to the point where synthesis would not be possible. Included material was appraised and an interpretative rather than aggregative approach to synthesis adopted. Drawing on principles of critical interpretive synthesis, rather than being a determiner of whether material should be included or excluded, a critique of the literature is offered within the synthesis. Twenty-eight references were identified for inclusion, originating from the UK, USA, Australia, Continental Europe and the Nordic Countries. No empirical studies specifically examining the experience of vulnerability of deafblind people were found. However, deafblind people describe feelings of vulnerability in studies exploring their experiences more generally, and in personal accounts of living with the impairment. Literature produced by practitioners and specialist organisations also explores the topic. Deafblind people are identified as a population 'at risk' of various adverse outcomes, particularly when compared to the non-deafblind majority, and deafblind people describe being and feeling vulnerable in various situations. The literature largely relates to negative outcomes and includes significantly less exploration of positive risk taking, coping capacity and resilience. Deafblind people do not appear to describe themselves as being vulnerable as a permanent state, suggesting a need for greater exploration of the experience among all sections of this heterogeneous population, with consideration of the concepts of resilience and coping capacity. [ABSTRACT FROM AUTHOR]

In England and Wales, decision-making in cases of uncertain mental capacity is regulated by the Mental Capacity Act 2005. The Act provides a legal framework for decision-making for adults (16 and over) who are shown to lack capacity and where best interest decisions need to be made on their behalf. Frail older people with cognitive impairments represent a growing demographic sector across England and Wales for whom the protective principles of the Act have great relevance, as they become increasingly dependent on the care of others. However, while the Act articulates core principles, applying the Act in everyday healthcare contexts raises challenges for care providers in terms of interpretation and application. This paper presents a review of the published evidence documenting the use of the Act in healthcare practice, with particular reference to frail older people. Our aim was to identify, review and critically evaluate published empirical studies concerned with the implementation and application of the Act in healthcare settings. A systematic approach was undertaken with pre-determined exclusion and inclusion criteria applied across five electronic bibliographic databases combined with a manual search of specific journals. This review reports on 38 empirical sources which met the inclusion criteria published between 2005 and 2013. From the 38 sources, three descriptive themes were identified: knowledge and understanding, implementation and tensions in applying the Act, and alternative perspectives of the Act. There is a need for improved knowledge and conceptualisation to enable successful incorporation of the Act into everyday care provision. Inconsistencies in the application of the Act are apparent across a variety of care settings. This review suggest staff need more opportunities to engage, learn and implement the Act, in order for it to have greater resonance to their individual practice and ultimately benefit patient care. [ABSTRACT FROM AUTHOR]

This paper is based on data collected in 2009 for the international Stigma Index Study which measured the experiences of stigma among participants living with HIV in the UK. Data were collected using a self-completed survey questionnaire and focus group discussions. Quantitative data were analysed using SPSS, while qualitative data were subjected to thematic analysis. The Stigma Index attempts to establish a baseline for documenting the experience of stigma and discrimination by people living with HIV while also acting as an advocacy tool whose power lay in the involvement of people living with HIV in the design of study instruments and data collection. Participants were recruited through collaborations with a broad range of UK HIV support organisations. The ethics protocols used were those described in the Stigma Index guidebook. A total of 867 people living with HIV took part, of whom 276 described themselves as 'immigrants'. Most of this 'migrant' subsample (70%) was women. Nearly, all (91%) identified as heterosexual, while 9% were attracted to someone of the same sex as them. Socioeconomic deprivation was a key theme and they reported other stigmatised chronic conditions in addition to HIV. It is not possible to ascertain from the questionnaire, the migrants' countries of origin and length of stay in the UK. Control of information about HIV was critically managed, with respect to family and partners. Felt stigma increased anxieties about personal safety, particularly among men. Strategies for safeguarding against the negative impact of stigma included avoiding social gatherings, intimacy, and clinical and HIV social care settings. Most participants were unaware of policies and declarations that protected them as persons living with HIV. Specific recommendations include creating awareness about rights as enshrined in various legal frameworks that protect the right of people living with HIV, which has been reconfigured as a 'disability'. [ABSTRACT FROM AUTHOR]

This paper reports the findings of a review of the literature on emergency admissions to hospital for older people in the UK, undertaken between May and June 2014 at the Health Services Management Centre, University of Birmingham. This review sought to explore: the rate of in/appropriate emergency admissions of older people in the UK; the way this is defined in the literature; solutions proposed to reduce the rate of inappropriate admissions; and the methodological issues which particular definitions of 'inappropriateness' raise. The extent to which a patient perspective is included in these definitions of inappropriateness was also noted, given patient involvement is such a key policy priority in other areas of health policy. Despite long-standing policy debates, relatively little research has been published on formal rates of 'inappropriate' emergency hospital admissions for older people in the UK NHS in recent years. What has been produced indicates varying rates of in/appropriateness, inconsistent ways of defining appropriateness and a lack of focus on the possible solutions to address the problem. Significantly, patient perspectives are lacking, and we would suggest that this is a key factor in fully understanding how to prevent avoidable admissions. With an ageing population, significant financial challenges and a potentially fragmented health and social care system, the issue of the appropriateness of emergency admission is a pressing one which requires further research, greater focus on the experiences of older people and their families, and more nuanced contextual and evidence-based responses. [ABSTRACT FROM AUTHOR]

Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012-2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health-related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners' assumptions about carers' willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision-making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems. [ABSTRACT FROM AUTHOR]

There is a growing interest in English-speaking jurisdictions, including Australia, North America, Canada, the United Kingdom and New Zealand, about the prevention of sexual abuse perpetrated by children against other children. The aim of this review was to identify opportunities for research, policy and practice which could enhance the prevention agenda relating to the perpetration of sexual abuse by children through conducting a Critical Interpretive Synthesis. Eleven electronic databases were searched in the period from 22 April to 23 May 2013 and included: SocINDEX, Social Services Abstracts, Applied Social Sciences Index and Abstracts, Family and Society Studies Worldwide, Project Muse, PsychINFO, Family and Society Plus, Jstor, Expanded Academic ASAP, Web of Science and Google Scholar. Key individual journals were also searched, including Child Abuse and Neglect and the Journal of Interpersonal Violence, as well as the grey literature. The search was guided by the research question: How could the prevention agenda relating to sexual abuse perpetrated by children be enhanced? The systematic literature search yielded 3323 titles, and 34 of these papers were included in the final synthesis. The authors identified five domains operating in the evidence base: characteristics, causes, communications, interventions and treatments. A synthesising construct emerged from the review: prevention-enhancing interactions. This construct referred to the potential for enhancing the prevention agenda which exists as the evidence domains interact with one another, and with the public health model of prevention. The authors consider this review to be a timely contribution to the current agenda pertaining to sexual abuse perpetrated by children. It provides researchers, policy makers and practitioners in the field with an evidence-informed conceptualisation of opportunities for enhancing prevention work. [ABSTRACT FROM AUTHOR]

Home-care re-ablement or 'restorative' services are a cornerstone of preventive service initiatives in many countries. Many English local authorities are transforming their former in-house home-care services to provide intensive, short-term re-ablement instead. The focus of this paper is on the organisation and content of re-ablement services and the features of their organisation and delivery that have the potential to enhance or detract from their effectiveness. Qualitative data were collected from five sites with well-established re-ablement services. Data included semi-structured interviews with senior service managers in each site; observation of 26 re-ablement visits to service users across the five sites (four to six in each site) and a focus group discussion with front-line staff in each site (in total involving 37 front-line staff). The data generated from all three sources were analysed using the framework approach. All five services had developed from selective pilot projects to inclusive 'intake' service, accepting almost all referrals for home-care services. A number of features were identified as contributing to the effectiveness of re-ablement services. These included: service user characteristics and expectations; staff commitment, attitudes and skills; flexibility and prompt intervention; thorough and consistent recording systems; and rapid access to equipment and specialist skills in the team. Factors external to the re-ablement services themselves also had implications for their effectiveness; these included: a clear, widely understood vision of the service; access to a wide range of specialist skills; and capacity within long-term home-care services. The paper argues that re-ablement can be empowering for all service users in terms of raising their confidence. However, the move to a more inclusive 'intake' service suggests that outcomes are likely to be considerably lower for service users who have more limited potential to be independent. The paper discusses the implications for practice. [ABSTRACT FROM AUTHOR]

Within the UK, there is growing recognition that individuals will need to take increased responsibility for managing their own health for there to be improvements in population health. The current evidence base on self care interventions reflects an interest in enhancing self care knowledge, skills and behaviour in relation to the management of long-term conditions. In contrast, this paper reports on a community-based self care initiative that was designed to promote self care approaches in the general population. The principal component was a self care skills training course delivered to groups of lay people in community and workplace settings. Self Care for People was piloted in three primary care trusts and a process evaluation was undertaken. The aim of this paper is to examine the feasibility, relevance and acceptability of the initiative. Qualitative interviews were conducted with a sample of stakeholders involved in implementation including coordinators, trainers and key informants from organisations hosting the course. In total 40 interviews and two focus groups were conducted from 2006 to 2008 and the data were analysed thematically. The evaluation found that implementation was relatively straightforward with few major barriers reported. Recruitment to the self care skills training course took place in both workplace and community group settings, including in organisations supporting socially excluded groups. The course was seen to provide a valuable space for contemplation on personal health, however, participation could raise sensitive issues that needed to be dealt with by skilled facilitators. Motivations for involvement differed markedly in host organisations and different strategies for marketing were adopted. The paper concludes by suggesting that while Self Care for People was both feasible and relevant to different stakeholder groups, there needs to be flexibility in responding to the needs of participants in different settings. [ABSTRACT FROM AUTHOR]