Personal assistants (PAs) emanate from the independent living movement and were introduced in response to disabled people’s oppression, rooted in discrimination, institutionalisation and asymmetrical forms of care. PA schemes allow disabled people to directly employ a PA, enabling choice and control over how and by whom support is provided. Empirical research demonstrates the complexity or ‘troubles’ entangled in PA–employer relationships, alongside the poor employment conditions often experienced by PAs. Yet, there is a lack of understanding of how such issues affect PA well-being. This systematic review of 47 items explores factors that affect and can support well-being outcomes for PAs. A search was conducted in February 2024. Items were included if they focused on the PA workforce, were published since 2000 and originated from Scotland and comparable nations. Three key findings are discussed through an ethics of care lens: interdependence and the significance of being attentive to the needs of both PAs and employers; the unique PA–employer relationship, which can support or hamper well-being; and the paradox between the rewarding nature of the job and its low public status. This article concludes that improving PA well-being is an important outcome for both PAs and PA employers and requires both structural and cultural change.

Background Having a terminal illness is associated with an increased risk of living in poverty and destitution at end of life. This is more pronounced for migrants who may not have the same social and cultural capital, or local family support that established citizens have. This paper explores the financial challenges for migrants with a terminal illness. Methodology Qualitative interviews were conducted with healthcare staff, and legal and migration specialists supporting migrants with a terminal illness in the UK. A total of 22 people were interviewed, comprising 14 working within health/palliative care settings, four in legal/policy settings, and four in migrant support. Findings Thematic analysis identified that having a terminal illness as a migrant accompanies severe financial and material challenge. Migrants continued to work while receiving chemotherapy and used unregulated money lenders to stave off poverty. The expense of visa applications, insecure visa terms, and exclusion from statutory and healthcare support combined to produce enormous financial, emotional and physical strain on terminally ill migrants. Interviewees situated these challenges as both impediments to their work supporting migrants, and as constituting a form of bureaucratic violence. Conclusion Financial precarity for migrants with terminal illness was exacerbated by bureaucratic systems and processes (e.g., immigration policy and welfare exclusion). There is urgent need for systemic reform to ensure that good quality of living and dying is not a privilege of the financially secure. However, this is predicated on a political will and interest to improve the lives and deaths of migrants with terminal illness.

Despite the promise of the NHS being open to all, charging regulations and policy for non-UK citizens have been introduced. This article reports an analysis of policies and parliamentary debates linked to the UK's Immigration Health Surcharge. We use Bacchi's 'what's the problem represented to be' approach to understand how migrants and their healthcare access are represented and problematised within current health policy and related parliamentary debates. Core problem formulations relate to historic over-generosity of the NHS to migrants and overseas visitors; a lack of fairness in contributions to the NHS by British taxpayers compared to migrants; and a threat to the NHS's long-term sustainability due to migrants' and overseas visitors' misuse. This represents migrants as a financial drain on the NHS and, consequently, a risk to its continuation. Together, the problem formulations produce a justification and rationale for the Immigration Health Surcharge and its subsequent increases.

Background:Care home residents often lack access to end-of-life care from specialist palliative care providers. Palliative Care Needs Rounds, developed and tested in Australia, is a novel approach to addressing this. Objective:To co-design and implement a scalable UK model of Needs Rounds. Design:A pragmatic implementation study using the integrated Promoting Action on Research Implementation in Health Services framework. Setting:Implementation was conducted in six case study sites (England, n = 4, and Scotland, n = 2) encompassing specialist palliative care service working with three to six care homes each. Participants:Phase 1: interviews (n = 28 care home staff, specialist palliative care staff, relatives, primary care, acute care and allied health practitioners) and four workshops (n = 43 care home staff, clinicians and managers from specialist palliative care teams and patient and public involvement and engagement representatives). Phase 2: interviews (n = 58 care home and specialist palliative care staff); family questionnaire (n = 13 relatives); staff questionnaire (n = 171 care home staff); quality of death/dying questionnaire (n = 81); patient and public involvement and engagement evaluation interviews (n = 11); fidelity assessment (n = 14 Needs Rounds recordings). Interventions:(1) Monthly hour-long discussions of residents' physical, psychosocial and spiritual needs, alongside case-based learning, (2) clinical work and (3) relative/multidisciplinary team meetings. Main outcome measures:A programme theory describing what works for whom under what circumstances with UK Needs Rounds. Secondary outcomes focus on health service use and cost effectiveness, quality of death and dying, care home staff confidence and capability, and the use of patient and public involvement and engagement. Data sources:Semistructured interviews and workshops with key stakeholders from the six sites; capability of adopting a palliative approach, quality of death and dying index, and Canadian Health Care Evaluation Project Lite questionnaires; recordings of Needs Rounds; care home data on resident demographics/health service use; assessments and interventions triggered by Needs Rounds; semistructured interviews with academic and patient and public involvement and engagement members. Results:The programme theory: while care home staff experience workforce challenges such as high turnover, variable skills and confidence, Needs Rounds can provide care home and specialist palliative care staff the opportunity to collaborate during a protected time, to plan for residents' last months of life. Needs Rounds build care home staff confidence and can strengthen relationships and trust, while harnessing services' complementary expertise. Needs Rounds strengthen understandings of dying, symptom management, advance/anticipatory care planning and communication. This can improve resident care, enabling residents to be cared for and die in their preferred place, and may benefit relatives by increasing their confidence in care quality. Limitations:COVID-19 restricted intervention and data collection. Due to an insufficient sample size, it was not possible to conduct a cost-benefit analysis of Needs Rounds or calculate the treatment effect or family perceptions of care. Conclusions:Our work suggests that Needs Rounds can improve the quality of life and death for care home residents, by enhancing staff skills and confidence, including symptom management, communications with general practitioners and relatives, and strengthen relationships between care home and specialist palliative care staff. Future work:Conduct analysis of costs-benefits and treatment effects. Engagement with commissioners and policy-makers could examine integration of Needs Rounds into care homes and primary care across the UK to ensure equitable access to specialist care. Study registration:This study is registered as ISRCTN15863801. Funding:This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128799) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 19. See the NIHR Funding and Awards website for further award information.

Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of 'academic' and 'PPIE' did not stand up to scrutiny, with an increasing blurring of boundaries as people's experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.

BackgroundRealist evaluation aims to address the knowledge to practice gap by explaining how an intervention is expected to work, as well as what is likely to impact upon the success of its implementation, by developing programme theories that link contexts, mechanisms and outcomes. Co-production approaches to the development of programme theories offer substantial benefits in addressing power relations, including and valuing different types of knowledge, and promoting buy-in from stakeholders while navigating the complex social systems in which innovations are embedded. This paper describes the co-production of an initial programme theory of how an evidence based intervention developed in Australia - called 'Palliative Care Needs Rounds' - might work in England and Scotland to support care home residents approaching their end of life.MethodsUsing realist evaluation and iPARIHS (integrated Promoting Action on Research Implementation in Health Services) we sought to determine how contexts and mechanisms of change might shape implementation outcomes. Pre-intervention online interviews (n = 28) were conducted (February-April 2021), followed by four co-design online workshops with 43 participants (April-June 2021). The online interviews and workshops included a range of stakeholders, including care home staff, specialist palliative care staff, paramedics, general practitioners, and relatives of people living in care homes.ResultsThis methodology paper reports developments in realist evaluation and co-production methodologies, and how they were used to develop context, mechanisms, outcomes (CMOs) configurations, and chains of inference. The initial (pre-intervention) programme theory is used to illustrate this process. Two developments to iPARIHS are described. First, involving stakeholders in the collaborative co-design workshops created opportunities to commence facilitation. Second, we describe developing iPARIHS' innovation component, to include novel stakeholder interpretations, perceptions and anticipated use of the intervention as they participated in workshop discussions.ConclusionsThis rapid and robust co-production methodology draws on interactive collaborative research practices (interviews, workshop discussions of data, illustrative vignettes and visual methods). These innovative and engaging methods can be packaged for online processes to develop, describe and interrogate the CMOs in order to co-produce a programme theory. These approaches also commence facilitation and innovation, and can be adopted in other implementation science and realist studies.

Background The Mental Health (Care and Treatment) (Scotland) Act 2003 was considered as world leading when it was enacted due to its rights-based approach. Changes were made to encourage participation and enhance autonomy, including the Mental Health Tribunal for Scotland (the tribunal) replacing the Sheriff Court in making decisions about compulsory treatment.Aims To explore the views of individuals on community based compulsory treatment orders (CCTOs) and independent advocates to assess whether participation in the tribunal is perceived as meaningful in practice.Method A qualitative research design was adopted and semi-structured interviews were undertaken with 19 people with experience of being on a CCTO and eight mental health advocates in Scotland. The data were thematically analysed and explored using ethics of care principles.Results Individuals faced barriers to participation, including mental distress, medication, and inaccessible communication, and both the tribunal process and outcome were important in shaping perceptions of fairness. A perceived unsuccessful outcome was found to undermine an ostensibly participatory process, and unequal power dynamics resulted in feelings of powerlessness.Conclusions The findings suggest that participation is often experienced as tokenistic in practice and that cultural change is required if people are to be meaningfully involved in tribunal proceedings.

Introduction Palliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called ‘Palliative Care Needs Rounds’ (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life.Methods and analysis This implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4–6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents’ quality of death and care home staff capability of adopting a palliative approach.Ethics and dissemination Frenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds.Registration details Registration details: ISRCTN15863801.

Mental health tribunals are responsible for making decisions about compulsory treatment for individuals considered a risk to themselves and others due to mental disorder. They are generally designed to provide safeguards for individuals subject to compulsory treatment by testing whether national legislative criteria and international human rights standards have been met. Despite this, they have been criticised for being dominated by the medical domain, focusing rigidly on legal criteria and for restricting human rights, including the rights to liberty and access to justice. As a result, questions have arisen over the extent to which mental health tribunals are indeed operating in line with their legislative intentions and international human rights requirements. The aim of this systematic review was to synthesise international evidence on this and to assess the extent to which this is reflected in such literature. A systematic search of the literature was conducted on the 17 April 2018 for articles published between 2000 and 2018 in MEDLINE, CINAHL, PsychINFO, ASSIA and Web of Science. All study designs were included within this review, provided they reported empirical findings. Thirty-two studies met the inclusion criteria. Eight themes were identified across the literature and these were participation, information and understanding, patient representation, the power of the medical domain, feelings of powerlessness, perceptions of fairness, risk and the impact on relationships. The findings call into question whether mental health tribunals necessarily operate in compliance with international human rights standards. This article suggests that mental health tribunals may need to do more to safeguard legislative principles and human rights standards that promote patient autonomy.

This edited collection by Bob Pease, Anthea Vreugdenhil, Sonya Stanford and colleagues, provides a timely and original theoretical and empirical contribution to a bourgeoning area of inter-discipli...

Burstow’s Psychiatry and the Business of Madness: An Ethical and Epistemological Accounting provides a systematic and thorough deconstruction of the foundations of psychiatry. Questioning the funda...