Search

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]

Delayed discharge from hospital is a global healthcare problem with negative impacts on patient outcomes and the wider health system. Delays to discharge can arise when a patient remains in hospital even when they are medically fit due to nonmedical reasons such as a lack of appropriate housing or social care. However, whilst several nonmedical interventions have been developed to facilitate timely hospital discharge, there remains a lack of evidence on their impact. This study reports on findings from a mixed-methods process evaluation of a newly integrated housing and health service in two United Kingdom- (UK-) based hospitals (one mental health hospital and one general hospital). The service involved housing support coordinators (HSCs) being based within hospitals and supporting inpatients with their housing-related needs. We employed qualitative interviews with service users and hospital/housing staff (N = 16) and routine data analysis (n = 488) to understand the impact of the service and any challenges to service delivery. Service users faced different housing barriers, for example: 28.3% experienced homelessness (n = 136) whilst 80 (16.4%) faced challenges with their accommodation no longer meeting their physical needs. Service users received support for a variety of issues such as assistance with medical priority applications, support to apply for social housing, and referral to other support services. Healthcare professionals at all levels credit the service for improving hospital discharge processes and reducing stress on clinical staff, enabling them to concentrate more effectively on clinical tasks. Key to success is experienced housing staff providing patient-centred support, being integrated within a multidisciplinary team with management and oversight from the health service, and the availability of appropriate housing stock and wider services to support people after discharge. Our findings indicate that other hospitals may benefit from implementing similar housing and health integrated services. [ABSTRACT FROM AUTHOR]

Short breaks help maintain caring relationships, enabling people to remain living in their own homes and contributing significant economic benefit to public services. However, relatively little is known about the added social value generated by community-based short breaks. To address this evidence gap, we explored the feasibility of using a social return on investment (SROI) evaluation to explore a day support service in North Wales for people living with dementia and their unpaid carers. Following good practice for evaluating complex interventions, we developed a logic model based on the literature and interviews to understand the mechanisms and outcomes of the day support service. Using questionnaires, we quantified outcomes for the current service cohort, which included people living with dementia, unpaid carers, and paid companions. Seven people living with dementia, three unpaid carers, and four companions completed questionnaires. By following the SROI analysis approach, three key learning points were identified. The first was around ways to capture outcomes from all stakeholder subgroups expected to experience material change. The second concerned the importance of collecting longitudinal data. This included the need to consider how to adapt the SROI method to work with small populations. The third concerned how to value "maintenance" of wellbeing as well as improved wellbeing. [ABSTRACT FROM AUTHOR]

An estimated 1.3 million stroke survivors living in the United Kingdom (UK) currently rely on family caregivers for daily support. The needs of stroke family caregivers are, however, not routinely assessed by most clinical services. Early identification of their needs and support is crucial to maintain their well-being and caregiver role. At present, stroke-specific caregiver screening tools are lacking. This mixed method, the multiphase study aimed to develop a Carers' Alert Thermometer for stroke family caregivers (CAT-S) by adapting the CAT, a short screening tool developed in the context of end-of-life care. Underpinned by principles of action research, qualitative and quantitative data were collected sequentially between February 2016 to December 2017 from purposive samples of stroke family caregivers (n = 76) and staff working within stroke services (n = 238) in the UK. Semistructured interviews were conducted to inform the contents of the CAT-S. Key items for inclusion were identified through a modified Delphi survey and consultation with an expert panel. The CAT-S was then piloted in North West England to test its usability and usefulness in practice to identify the needs of stroke family caregivers. Thematic and content analysis were used to analyse qualitative data. Quantitative data were analysed using descriptive statistics. The CAT-S comprises the key challenges that are experienced by stroke family caregivers. Two additional items not present on the original CAT were identified and included; training needs of family caregivers to provide care and support for caregivers' emotional needs. The CAT-S was found to be useful and acceptable by both staff and stroke family caregivers and resulted in action plans and support being provided. The CAT-S is a supportive tool for achieving person-centred care and prioritising stroke family caregivers requiring comprehensive assessments. [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]

This study examined the emergence and implementation of community touchpoints established in the UK during the COVID‐19 pandemic for victims/survivors of domestic abuse (DA). Community touchpoints are designated places, both online and in accessible settings such as pharmacies and banks, where victims/survivors can seek confidential advice and be directed to expert DA services. The research adopted a case study approach and explored a range of perspectives through expert interviews, document analysis, consultation with survivors and stakeholders and a survey of DA co‐ordinators. Four national community touchpoint schemes were identified and, of these, three were implemented rapidly and were available in 2020–2021 when the UK experienced lockdowns. Partnerships between Government/voluntary organisations and commercial businesses‐assisted design and implementation. Some stakeholders considered that the schemes lacked responsivity to the local context and noted challenges in providing a confidential service in rural areas. Whilst pharmacies, banks and online spaces were identified as non‐stigmatised and trusted places to seek advice, community touchpoints were judged less accessible for some groups including those experiencing digital poverty and victims whose movements were heavily scrutinised. Most of the touchpoint schemes targeted adults only. There were also concerns about whether frontline staff in commercial businesses received sufficient training. Whilst robust evidence of outcomes was limited, there were indications that the schemes had achieved good reach with some early evidence of take‐up. Testimonials indicated that victims/survivors were using the touchpoints in flexible ways which met their needs. Moreover, the wide reach and visibility of these initiatives delivered in non‐stigmatised settings may have served to raise public awareness of DA, reducing the silence that has traditionally surrounded it. Further research into the use and impact of these initiatives is required and there may be future potential to extend community touchpoints to include children and young people experiencing DA. [ABSTRACT FROM AUTHOR]

Increasing evidence on men's involvement in informal, unpaid care has not transferred to the research literature around men's experiences. The aim was to explore the perspectives of men who are caring for a female partner with cancer over 1 year. Longitudinal narrative interviews (n = 22) were conducted with eight men in the UK from 2018 to 2019. Participants were aged from 32 to 76 years old, were all white British and in heterosexual relationships with women diagnosed with a range of cancer types. Interviews were transcribed and then analysed using a structural and performance approach to narrative analysis. We present, across four scenes, a process of change, transition and emotion management as the men were launched into a role that came with new responsibilities and expectations. Our study advances knowledge by highlighting the way that men perform and reflect on their negotiation with masculine discourses while supporting their partner, with implications for policy, research and practice. [ABSTRACT FROM AUTHOR]

Supported living has been shown to improve functioning and social inclusion in people with severe and persistent mental health problems, reduce hospitalisation and provide secure accommodation in a population where housing needs are often unmet. Conversely, living in supported accommodation has been depicted by some as depersonalising, marginalising and an ordeal to survive. Discussions regarding housing and support often lack a thorough consideration of individual experiences, with a reliance on quantitative surveys. The question remains how to assure that supported accommodations actually are supportive of the residents' ongoing recovery process. The present study sought to shed light on the experiences of residents in an enhanced supported living service in the United Kingdom. Semi‐structured interviews were conducted with nine residents of the service between July 2020 and February 2021. Transcripts were analysed using thematic analysis and indicated three superordinate themes of experiences considered valuable to residents: (1) support from care staff which was readily available; (2), a sense of community and daily activity offered by the residence and on‐site activities; and (3) the experience of supported living as a stepping‐stone in an ongoing recovery process. Findings indicate the power of comprehensive care with supportive staff, peer‐relations, autonomy and fostering hope in empowering individuals in their ongoing recovery. [ABSTRACT FROM AUTHOR]

Since the onset of the Covid‐19 pandemic, the UK, like many countries, has had restrictions on social contact, and injunctions of 'social distancing'. This study aimed to generate new insights into men's experiences of loneliness during the pandemic, and consider the ramifications of these for continued/future restrictions, the easing of restrictions, and the future beyond the pandemic. Twenty qualitative interviews were conducted with men between January and March 2021. A maximum variation purpose sample frame required at least three non‐white men, three LGBTQ+men, three men with a university education, three without a university education, three 18–30 years old, and three aged 60+. Thematic analysis, focused on semantic themes, was employed as part of a 'grounded' epistemology whereby the stated perspectives of the interviewees drove the content of the study. Seven themes were constructed: (i) lost and new activities and routines; (ii) remote social interaction; (iii) narrowed social spheres; (iv) rethought and renewed recognition of what is important; (v) loneliness with a purpose; (vi) anxiety of social contact; and (vii) easier for themselves than others. Lost routines, fewer meaningful activities, and a reduction in face‐to‐face interaction, were framed as challenges to preventing loneliness. Solo‐living gay men seemed particularly negatively affected. However, many men displayed new, more covid‐safe routines and activities. Remote forms of interaction were often utilised, and though they were imperfect, were constructed as worth engaging with, and held capacity for improvement. A moral need to reduce transmission of SARS‐COV‐2, and a fear of catching it, became important features of participants lives that also affected loneliness. Men at higher risk of health complications from Covid‐19 were particularly likely to highlight anxiety of social contact. Reducing restrictions alone may not return everyone to pre‐pandemic levels of loneliness, particularly if the pandemic remains a significant public health issue. [ABSTRACT FROM AUTHOR]

Little is known on how the pandemic has changed care home care delivery. The aim of this study was to explore the impact of COVID‐19 on care provision and visits in care homes from staff and family members' perspectives. For this purpose, we conducted a telephone‐ and zoom‐based qualitative semi‐structured interview study. Care home staff and family carers of people living with dementia (PLWD) across the UK were recruited via convenience sampling and participated via telephone or online. Participants took part in a semi‐structured remote interview. Data were collected between October and November 2020. Anonymised transcripts were analysed separately by two research team members using thematic analysis, with codes discussed and themes generated jointly, supported by research team input. 42 participants (26 family carers and 16 care home staff) took part. Five themes were generated: (a) Care home reputation and financial implications; (b) Lack of care; (c) Communication or lack thereof; (d) Visiting rights/changes based on residents' needs; (e) Deterioration of residents. With a lack of clear guidance throughout the pandemic, care homes delivered care differently with disparities in the levels and types of visiting allowed for family members. Lack of communication between care homes and family members, but also government and care homes, led to family carers feeling excluded and concerned about the well‐being of their relative. Improved communication and clear guidance for care homes and the public are required to negate the potentially damaging effects of COVID‐19 restrictions upon residents, their families and the carers who support them. [ABSTRACT FROM AUTHOR]

Despite the increasing policy focus on integrated dementia care in the UK, little is known about the opportunities and challenges encountered by practitioners charged with implementing these policies on the ground. We undertook an extensive, mixed‐methods analysis of how a contemporary multidisciplinary dementia pathway in the UK was experienced and negotiated by service providers. Our pragmatic mixed methods design incorporated three types of research interaction with practitioners: (a) Semi‐structured interviews (n = 31) and focus group discussions (n = 4), (b) Practitioner 'shadowing' observations (n = 19), and (c) Service attendance and performance metrics reviews (n = 8). Through an abductive analysis of practitioner narratives and practice observations, we evidenced how inter‐practitioner prejudices, restrictive and competitive commissioning frameworks, barriers to effective data sharing and other resource constraints, all challenged integrative dementia care and led to unintended consequences such as practice overlap and failure to identify and respond to people's needs. In order to more successfully realise integrated dementia pathways, we propose innovative commissioning frameworks which purposefully seek to diffuse power imbalances, encourage inter‐provider respect and understanding, and determine clear lines of responsibility. [ABSTRACT FROM AUTHOR]