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Background: Selective serotonin reuptake inhibitors (SSRIs) are commonly prescribed to manage anxiety in adults with an autism diagnosis. However, their effectiveness and adverse effect profile in the autistic population are not well known. This trial aims to determine the effectiveness and cost-effectiveness of the SSRI sertraline in reducing symptoms of anxiety and improving quality of life in adults with a diagnosis of autism compared with placebo and to quantify any adverse effects. Methods: STRATA is a two-parallel group, multi-centre, pragmatic, double-blind, randomised placebo-controlled trial with allocation at the level of the individual. It will be delivered through recruiting sites with autism services in 4 regional centres in the United Kingdom (UK) and 1 in Australia. Adults with an autism diagnosis and a Generalised Anxiety Disorder Assessment (GAD-7) score ≥ 10 at screening will be randomised 1:1 to either 25 mg sertraline or placebo, with subsequent flexible dose titration up to 200 mg. The primary outcome is GAD-7 scores at 16 weeks post-randomisation. Secondary outcomes include adverse effects, proportionate change in GAD-7 scores including 50% reduction, social anxiety, obsessive-compulsive symptoms, panic attacks, repetitive behaviours, meltdowns, depressive symptoms, composite depression and anxiety, functioning and disability and quality of life. Carer burden will be assessed in a linked carer sub-study. Outcome data will be collected using online/paper methods via video call, face-to-face or telephone according to participant preference at 16, 24 and 52 weeks post-randomisation, with brief safety checks and data collection at 1–2, 4, 8, 12 and 36 weeks. An economic evaluation to study the cost-effectiveness of sertraline vs placebo and a QuinteT Recruitment Intervention (QRI) to optimise recruitment and informed consent are embedded within the trial. Qualitative interviews at various times during the study will explore experiences of participating and taking the trial medication. Discussion: Results from this study should help autistic adults and their clinicians make evidence-based decisions on the use of sertraline for managing anxiety in this population. Trial registration: ISRCTN, ISRCTN15984604. Registered on 08 February 2021. EudraCT 2019-004312-66. ANZCTR ACTRN12621000801819. Registered on 07 April 2021. [ABSTRACT FROM AUTHOR]

Purpose: Most abuse affecting older adults in the UK, as across Europe, takes place within caring relationships, where one person is disabled and needs care/support. This paper critically appraises two of the key theoretical explanations. First, feminist theories of "intimate partner abuse" tell us that it is mostly men who perpetrate abuse against women. Second, "carer strain": the stress caused by caring responsibilities, often with inadequate help from services. Neither fully reflects the complex dynamics of "dangerous care" leading to a lack of voice and choice in safeguarding responses. This paper aims to articulate the need for an overarching theoretical framework, informed by a deeper understanding of the intersectional risk factors that create and compound the diverse experiences of harm by disabled people and family carers over the life course. Design/methodology/approach: The critical synthesis of the theoretical approaches informing UK policy and practice presented here arises from a structured literature review and discussions held with three relevant third sector agencies during the development of a research proposal. Findings: No single theory fully explains dangerous care and there are significant gaps in policy, resources and practice across service sectors, highlighting the need for joint training, intersectional working and research across service sectors. Originality/value: Drawing both on existing literature and on discussions across contrasting policy and practice sectors, this paper raises awareness of some less well-acknowledged complexities of abuse and responses to abuse in later life. [ABSTRACT FROM AUTHOR]

Background: Primary progressive aphasia (PPA) describes a group of language‐led dementias. PPAs are complex, diverse and difficult to diagnose, and therefore conventional models of aphasia and dementia treatment do not meet their needs. The research evidence on intervention for PPA is developing, but to date there are only a few case studies exploring the experiences of people with PPA (PwPPA) themselves. Aims: To explore the experiences and opinions of PwPPA and their communication partners (CPs) to understand how speech and language therapy (SLT) services can better meet their needs. Methods & Procedures: A qualitative research approach was used whereby PwPPA and their friends or family members were recruited to participate in focus groups, via advertisements in the Rare Dementia Support PPA group newsletters. Consenting participants were allocated to attend one of four focus groups hosted on an online video conferencing platform. Participants were asked about their communication difficulties, and how SLT could address these needs. All meetings were transcribed, and data were examined using reflexive thematic analysis. Outcomes & Results: Six PwPPA and 14 CPs representing all three PPA variants and mixed PPA participated in the focus groups. Four main themes were identified during the analysis of the focus group discussions: (1) CPs' burden, (2) adjusting to the diagnosis, (3) communication abilities and difficulties and (4) beyond language. A further 10 subthemes were identified. Conclusions & Implications: This study provides a greater understanding of the experiences and needs of PwPPA and their families in relation to SLT. This work underlines the importance of a person‐centred approach that considers the broader needs of both the PwPPA and the people around them. This will enable service providers to deliver SLT that meets the needs of PwPPA and their families and will also inform future research in this field. WHAT THIS PAPER ADDS: What is already known on this subject: We know that PwPPA can maintain or even make improvements in word retrieval and speech fluency with SLT exercises. There is also developing evidence of the benefits of interventions such as CP training, communication aid support and other functional interventions. What this paper adds to existing knowledge: This study provides an understanding of the experiences and opinions of people living with PPA and their families in relation to SLT. Results demonstrate that PwPPA and their families have to navigate a complex journey, identifying strategies to support communication but also the influence of personality and other cognitive symptoms. SLT was useful, but not always available. What are the potential or actual clinical implications of this work?: This study will enable service providers to better plan, justify funding for and delivery of SLT that will meet the needs of PwPPA and their families. Most importantly this work underlines the importance of a person‐centred approach, incorporating the broader needs of the person with PPA and those around them. [ABSTRACT FROM AUTHOR]

Accessible summary: What is known on the subject?: Dementia affects an increasing number of people and a person with dementia requires significant levels of care.Dementia care is often delivered by family members.Caring for someone with dementia places significant demand on the carer and support for the carer is often needed. What the paper adds to existing knowledge?: Research has been conducted into caregivers' experiences of caring for someone with dementia, but a synthesis of findings for studies from the UK is needed to collate the research evidence and provide an account of the common trends within the existing research.This paper adds to existing knowledge by highlighting the key difficulties experienced by carers of a person with dementia in their caring role and their experiences with support services across the existing research evidence. What are the implications for practice?: Improvements to the process of dementia assessment and the process of receiving a dementia diagnosis are needed.Information and support needs to be more accessible for the carer of a person with dementiaCultural differences need to be acknowledged in the support and information offered to carers of a person with dementia. Aim: To understand the experiences of informal carers' of individuals with dementia in the UK when engaging with services for support in their caring role. Methods: Following the PRISMA guidelines, a qualitative systematic literature review was carried out. Six Internet databases were searched. Results were screened, and eligible studies were appraised using Critical Appraisal Skills Programme (CASP, 2019) and data synthesized using Evan & Pearson (2001) and Evans (2002). Results: The search returned 231 records, 11 were selected for critical appraisal and data synthesis. Four main themes (information for carers, process of diagnosing dementia, difficulties accessing support and cultural differences of experiences of services) were extracted. Discussion: Carers experience services as providing inadequate support for the Person with Dementia (PwD) and themselves for support relating to dementia. Difficulties in receiving information and support were experienced from before diagnosis to end‐of‐life (EoL) care. Additionally, cultural differences were found in carers' experiences. Implications for practice: The provision of and access to dementia support should be improved; more information for carers about dementia and dementia services is needed; cultural differences need to be appreciated in the support and information offered. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on the article by Rachel Forrester-Jones on the experiences of older carers of people with learning disabilities. Design/methodology/approach: The commentary reflects on the themes identified in the original article, comparing its findings to the lived experiences of those taking part in older carers' projects in Oxfordshire, England. Findings: Similar broad themes were identified in both samples. Given these findings, the extent to which matters have changed, since the Valuing People work on older carers is considered. Originality/value: The paper discusses policy and practice implications to improve the quality of life of older carers and their families and explores how the voice of older carers can be strengthened to enable them to shape practice and policy. [ABSTRACT FROM AUTHOR]

Retinitis Pigmentosa (RP), a group of inherited retinal dystrophies characterised by progressive vision loss, is the leading cause of visual disability and blindness in subjects less than 60 years old. Currently incurable, therapy is aimed at restricting degeneration of vision, treating complications, and helping patients to cope with the psychosocial impact of their disease. Hence, RP is associated with a high burden of disease. This paper describes the current therapeutic landscape for RP and the disease burden for patients, caregivers, and society. A review of available data was conducted in three stages: (1) a literature search of publicly available information on all domains of RP; (2) a systematic literature review using Medline, Embase, the Cochrane Library and grey literature (GlobalData) on epidemiology and cost of RP; and (3) qualitative research with senior physicians treating RP patients in the EU4 and the UK to validate research findings from secondary sources. RP severely impacts the daily lives of over a million people worldwide. Progressive vision loss significantly affects the ability to perform basic daily tasks, to maintain employment, and maintain independence. Consequently, most patients will experience reduced quality of life, with a greater emotional and psychological impact than other conditions related to vision loss such as diabetic retinopathy or age-related macular degeneration. RP is also associated with a high level of carer burden, arising from psychological and financial stress. The therapeutic landscape for RP is limited, with few treatment options and minimal guidance for the diagnosis, treatment, and care of patients. A curative intervention, voretigene neparvovec (Luxturna®), only exists for 1– 6% of patients. Although disease management can be successful in developing coping strategies, most patients live with this chronic, progressive condition without interventions to change the disease course. Innovative new therapies can transform the therapeutic landscape, provided appropriate clinical guidance is forthcoming. [ABSTRACT FROM AUTHOR]

Objective: Carers play an important role within the UK mental health system. Those carers who support persons with psychosis can experience a reduction in their own physical and mental health. As part of the Caring for Caregivers (C4C) trial, we piloted a writing intervention (Positive Written Disclosure) that has been shown to improve wellbeing in other populations. Although we reached our recruitment target, we encountered several barriers that made recruitment slower than anticipated. This paper synthesises the process data collected during the C4C trial that relates to the barriers to recruiting and retaining psychosis carers. Results: We encountered four main carer-specific barriers to the recruitment and retention of participants in our study. These were: (1) poor relationship with mental health clinicians, (2) conflicting with the care recipient's (CR) needs, (3) lack of spare time, and (4) lack of services for mental health carers. The interventions to assist carers need to be informed by robust evidence and this requires trials that reach their recruitment targets. By sharing our practical experiences other researchers and clinicians can modify their practices to minimise recruitment difficulties and delay. Trial registration ISRCTN79116352. Retrospectively registered (before the final participant was recruited) on 23rd January 2017 [ABSTRACT FROM AUTHOR]

In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP). ACP is a complex legal, ethical and practical issue that can enable caregivers to consider future strategies and enable them to provide high quality care at the end of life. The paper looks at some of the ethical and legal issues associated with this sensitive end-of-life issue. [ABSTRACT FROM AUTHOR]

This paper explores the challenges that female elder carers in the United Kingdom face in combining paid work with elder care, and the implications of this care for their current and future working lives. In-depth interviews with 11 working women from a large organisation were conducted, and five of the women were re-interviewed after a period of one year to examine any changes in their situation. The interviews revealed the precarious nature of their daily schedules, which required constant effort to maintain, the intrusion of elder care into their working lives, and the impact it had upon their career development and future aspirations. The findings provide insight into the reasons why carers, especially women, are more likely to reduce their working hours, do not take advantage of training opportunities and retire early. The findings are discussed in relation to the expectation of an extended working age and gender equality. [ABSTRACT FROM AUTHOR]

Residential child care is an inherently distressing and multi-layered endeavour undertaken by staff who are often poorly trained and supported. In addition, the children, and the adults who care for them, can provide a convenient receptacle for the split off negative feelings of professionals, politicians and the public. The complexity and difficulty of this work is often unrecognised and a simplistic response based on a programmatic, behavioural framework, reinforced by performance-based management and an audit culture, is common. This paper argues for the usefulness of a different approach, drawing on psychoanalytic and open systems thinking, to provide a more nuanced understanding of what is happening in these volatile settings that can guide interventions which match the complexity of the work. Alongside advocating the use of key psychoanalytic and systems concepts to improve understanding, it argues for the importance of providing a containing and reflective environment for staff. [ABSTRACT FROM AUTHOR]

Purpose – The purpose of this paper is to explore the role of culture in shaping the caregiving experiences of British South Asian families caring for a child with developmental disabilities in the UK. In particular it explores how the coexistence of two distinct cultures (British/South Asian) impacts upon these caregiving experiences. Design/methodology/approach – A qualitative design using in-depth interviews and interpretative phenomenological analysis was used with seven parents identifying as British South Asian who had been born in the UK or had moved to the UK as young people. Findings – Three master themes emerged: living with loss, uncertainty and overwhelming responsibility; learning about disability and facing stigma; and having to cope. Research limitations/implications – Using a relatively homogeneous sample of carers this study provides an insight into how exposure to two different cultures shapes the understanding and adaptations of British South Asian carers in the UK. Social implications – Issues in the acculturation of these parents emerge which demonstrate the tensions they face in relating to both South Asian and Western cultural influences. The study makes recommendations for how services can work with such families in order to help them make sense of their children’s disability, access culturally appropriate support and cope with the numerous demands of being a caregiver. Originality/value – This paper contributes to a growing literature on the experience of South Asian parents who care for children with intellectual disabilities. It has important messages for workers about how to support these individuals most effectively. [ABSTRACT FROM AUTHOR]

As the number of people with dementia in Japan continues to rise, family caregivers are experiencing an increasing care burden. Previous research has shown that this care burden can affect family caregivers' physical and mental health. Therefore, providing support for caregivers of family members with dementia has become an urgent issue in the country. The purpose of this study was to investigate the feasibility of applying STrAtegies for RelaTives (START), a psychosocial intervention programme developed in the UK to improve caregivers' moods and quality of life, to Japanese family caregivers. Specifically, in this paper, we provide a detailed description of the application of the Japanese version of START to a female caregiver. Our investigation found that the Japanese version of START is a feasible option for alleviating the mental and physical burden on family caregivers of patients with dementia. This result provides preliminary support for the wider application of START in Japan, as it can decrease care burden and improve the daily lives of caregivers of people with dementia. It also supports the development and implementation of other systems that can provide similar services for other caregivers. [ABSTRACT FROM AUTHOR]

Purpose – This paper describes an ongoing process of engagement with carers of people with intellectual disabilities currently being monitored by an out of area service for both carers of people placed both in area and out of area within a local Mental Health Learning Disabilities team in South London. Design/methodology/approach – Using a series of consultation events, carers were asked to participate in a free dialogue which focussed on everyday issues for carers. This included financial implications of caring, knowledge of care pathways/systems in care, carer's needs and expectations and the support they currently receive. Findings – This paper highlighted a number of issues and concerns that carers face in their daily lives when supporting one or more people. These include lack of recognition, financial difficulties, lack of training and support. Originality/value – This project offered a valuable insight into current carer perceptions and will help develop further discussion and promote greater engagement by services and mutual understanding with this often neglected group. [ABSTRACT FROM AUTHOR]

Purpose - This paper seeks to reconcile society's need to apply strong sanctions to parents who are responsible for the murder of a disabled adult while also recognising the stresses present in their lives. Design/methodology/approach - The paper reviews six cases in which seven disabled adults were killed by a parent in the UK between 1999 and 2009. Findings - The review found that these were no ordinary crimes and nor were they motivated by malice, but occurred against a backdrop of significant mental illness and distress. In addition, two of the parents killed themselves as well as their adult child and another attempted suicide. The explanations offered in court to account for the murders included a combination of caregiver stress and mercy killing and the courts struggled to find a consistent approach. Research limitations/implications - The review is limited to cases reported in the press and only considers information in the public domain. The portrayal of the issues in the media is integral to the study. The cases reported in this paper are a sub-set of a larger sample of children and adults murdered by caregivers during this period. Originality/value - The paper compares and contrasts some features of these high-profile cases, commenting on the way they were addressed in the courts and making recommendations as to how the backdrop of significant mental ill-health could be taken into account in the way families are offered support with a view to preventing further tragedies. [ABSTRACT FROM AUTHOR]

Many people with dementia are cared for by family members. Family carers often feel bound to support the person with dementia at the expense of their own needs, which can be neglected. They often experience distress when making decisions, especially over ethical dilemmas when their own interests and those of the person being cared for conflict. This paper presents a case study approach to consider best interests decision making for families affected by dementia. In the case study, a carer is supporting his father to remain living at home although he feels this unsafe and the demands of this cause tension with his family and affect his performance at work. [ABSTRACT FROM AUTHOR]

Purpose – How resources for social care are allocated to individual service users has long been a concern. There are debates regarding the priority given to certain needs in Resource Allocation Systems (RASs). The purpose of this paper is to compare the views of adults with a learning disability and Directors of Adult Social Care regarding their priorities for resource allocation with priorities arising from observed resource allocation decisions. Design/methodology/approach – In a consultation workshop, 12 adults with learning disabilities were asked to rank the perceived importance of eight needs-related outcomes. Directors of Adult Social Care completed an online questionnaire concerning the distribution of resources across the same eight outcomes. Actual resource allocation data from 11 local authorities were also modelled against these outcomes. A variable importance metric (the percentage contribution of each outcome to predicting costs) was used to rank the importance of these outcomes in terms of determining actual resource allocation. Findings from these data collections were compared. Findings – There were discrepancies between the views of adults with a learning disability, the perspectives of Directors and actual resource allocation data. Whereas adults with a learning disability perceived psychological well-being as most important, Directors and actual resource allocation data stressed the importance of activities of daily living and carer burden. Originality/value – This analysis will prove useful in understanding the concerns of adults with a learning disability and whether these are adequately addressed by current RASs. [ABSTRACT FROM AUTHOR]

The cancer needs of people with intellectual disabilities are increasingly being debated. This paper explores the views and experiences of paid- and family-carers when supporting women with intellectual disabilities through breast screening. An ethnographic approach was drawn on and purposive sampling methods were employed. One-to-one semi-structured interviews with 13 carers (10 paid-carers, three family-carers) were undertaken and supported by periods of focused observation on behaviour related to breast awareness and breast screening. Findings indicated that most women with intellectual disabilities needed some support but the quality and quantity of support depended upon both the woman's level of intellectual disability and who was supporting them. In terms of breast screening, the findings suggested that the women were potentially being let down at all the different stages of the breast screening process, from the arrival of the invitation letter to the experience of having a mammogram. The conclusion drawn was that there was evidence of equality of service provision but inequality of service delivery and uptake. [ABSTRACT FROM AUTHOR]

Experienced Carers Helping Others (ECHO) is a guided self-help intervention for carers of people with eating disorders to reduce distress and ameliorate interpersonal maintaining factors to improve patient outcomes. The aim of this paper is to describe the theoretical background and protocol of a randomised controlled trial that will establish whether ECHO has a significant beneficial effect for carers and the person they care for. Individuals with anorexia nervosa and carers will be recruited from eating disorder inpatient/day patient hospital services in the UK. Primary outcomes are time until relapse post-discharge (patient) and distress (carer) at 12 months post-discharge. Secondary outcomes are body mass index, eating disorder symptoms, psychosocial measures and health economic data for patients and carers. Carers will be randomised (stratified by site and illness severity) to receive ECHO (in addition to treatment as usual) or treatment as usual only. Potential difficulties in participant recruitment and delivery of the intervention are discussed. Copyright © 2012 John Wiley & Sons, Ltd and Eating Disorders Association. [ABSTRACT FROM AUTHOR]