The provision of person-centred care for care home residents with stroke: An ethnographic study.

Care home residents with stroke have higher levels of disability and poorer access to health services than those living in their own homes. We undertook observations and semi-structured interviews (n = 28 participants) with managers, staff, residents who had experienced a stroke and their relatives in four homes in London, England, in 2018/2019. Thematic analysis revealed that residents' needs regarding valued activity and stroke-specific care and rehabilitation were not always being met. This resulted from an interplay of factors: staff's lack of recognition of stroke and its effects; gaps in skills; time pressures; and the prioritisation of residents' safety. To improve residential care provision and residents' quality of life, care commissioners, regulators and providers may need to re-examine how care homes balance safety and limits on staff time against residents' valued activity, alongside improving access to specialist healthcare treatment and support.

Evaluation of a community-based performance arts programme for people who have experienced stroke in the UK: protocol for the SHAPER-Stroke Odysseys study.

INTRODUCTION: Stroke survivors, once in the community, face challenges with their long-term rehabilitation care and present higher levels of loneliness, depression and anxiety than the rest of the population. A community-based performance arts programme, Stroke Odysseys (SO), has been devised to tackle the challenges of living with stroke in the UK. In this study, we aim to evaluate the implementation, impact and experiences of SO for stroke survivors. METHODS AND ANALYSIS: Scaling-up Health Arts Programmes: Implementation and Effectiveness Research (SHAPER)-SO aims to scale-up SO to 75 participants and 47 stakeholders, while simultaneously evaluating the effectiveness and implementation of the programme. The main research aim is to evaluate the implementation, effectiveness, impact and experiences of a community-based performance arts programme (SO for stroke survivors). This mixed-methods study will evaluate the experience and impact of SO on those participating using mixed methods (interviews, observations and surveys) before and after each stage and carry out non-participant observations during a percentage of the workshops, training and tour. Data will be analysed using quantitative and qualitative approaches. This is a study within the SHAPER programme. ETHICS AND DISSEMINATION: Ethical approval has been granted by the King's College London PNM Research Ethics Panel, REC reference: LRS/DP-20/21-21549. Written informed consent will be sought for participants and stakeholders. The results of the study will be reported and disseminated at international conferences and in peer-reviewed scientific journals. TRIAL REGISTRATION NUMBER: NCT04864470.

Is disclosing an autism spectrum disorder in school associated with reduced stigmatization?

Evidence suggests disclosing an autism diagnosis is associated with reduced stigmatization for autistic adults. However, it is unknown whether this is true for autistic adolescents. We used a vignette-and-questionnaire design to study stigmatizing attitudes with adolescents (aged 11-12 and 14-16 years, total N = 250) in a UK school. We investigated the effect of disclosing that a fictional adolescent had an autism diagnosis on stigmatizing attitudes of peers by testing the effect of disclosure of diagnosis on the social and emotional distance pupils wanted to maintain from the autistic adolescent. We also tested the effect of disclosure on peers' assessment of the adolescent's responsibility for their own behaviour. We checked to see if the effects were moderated by gender and age-group. Disclosing autism did not affect the social and emotional distance peers wanted to maintain from the autistic adolescent, but was associated with significant reduction in personal responsibility attributed to the adolescent's behaviour. Boys attributed more personal responsibility to the autistic adolescent than girls, but this gender effect was reduced when autism was disclosed. These findings suggest that disclosing autism to other pupils may be of limited use in reducing stigmatization by peers in UK schools.

Understanding kidney transplant patients' treatment choices: The interaction of emotion with medical and social influences on risk preferences.

Following renal transplantation patients experience on-going immunosuppressant medication to reduce the risk of graft rejection. Over the long term the side effects of immunosuppressive drugs may affect graft survival and significantly increase risks of cancers, stroke and cardiovascular disease. To reduce these risks research is underway to develop a biomarker test to identify those patients who are likely to be 'tolerant' to their graft and therefore able to reduce immunosuppression. Biomarker tests may however incorrectly identify some patients as tolerant, thus jeopardising their graft. Following a quantitative assessment of risk preferences we undertook a qualitative study to investigate the range of influences that shaped the substantial variations found in the level of risk transplant recipients were hypothetically willing to take. In-depth interviews were carried out in the United Kingdom between May 2013 and July 2014 with 24 transplant recipients all of whom had stable kidney graft function. These interviews identified a range of factors that patients take into account when making risk assessments, including familial views, trust and the ritual of 'gift exchange' that permeates the social space of kidney transplantation. Our data support the notion that emotion is not part of a linear process, preceding and separate to reason, but is intertwined with personal understanding and perception of risk and involves a complex interplay between different influences on decision-making. Our data also support Lupton's view that risk judgements are shared and collective rather than located within the individual and suggests that patient choice rather than involving a purely rational weighing of medical benefit is often based on influences that may not accord with the framework nor intention of medical professionals and medical research.

A social science view on the FRAME symposium: identities and networks.

This paper, written by two social scientists, presents a social science perspective on the issues raised at the FRAME symposium on Human Alternatives to Animal Studies. Drawing upon the authors' experience of conducting research with stem cell scientists, issues around access to human tissue for in vitro uses are considered. The paper concludes by raising questions pertinent to both interested social scientists and the Three Rs agenda.