Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research

As autism has gained increased attention in the past few decades, autistic advocates have adopted the phrase “Nothing about us without us,” illustrating the idea that autistic people should be centered in all conversations regarding autism. However, in a large portion of autism research, autistic people are still not meaningfully engaged throughout the research process, leading to continued stigma in research through biased methods. Thus, stigma about autism influences not only the content of autism research, but the ways in which neurotypical people conduct research alongside (or without) autistic people, ultimately resulting in less valid conclusions or research that actively harms the autistic community. One way to address this stigma is through involving autistic individuals as equal partners in the research process, such as by including autistic co-interviewers in qualitative studies of autistic people. In this perspectives piece, we will highlight the benefits of participatory research practices within qualitative research. Furthermore, we will outline methods for conducting co-interviews with autistic research partners and share insights from our experiences implementing this practice. We hope this piece provides researchers the practical resources and inspiration to continue working toward decreasing the stigma surrounding autism in research spaces

Molecular markers and mechanisms of stroke: RNA studies of blood in animals and humans

Whole genome expression microarrays can be used to study gene expression in blood, which comes in part from leukocytes, immature platelets, and red blood cells. Since these cells are important in the pathogenesis of stroke, RNA provides an index of these cellular responses to stroke. Our studies in rats have shown specific gene expression changes 24 hours after ischemic stroke, hemorrhage, status epilepticus, hypoxia, hypoglycemia, global ischemia, and following brief focal ischemia that simulated transient ischemic attacks in humans. Human studies show gene expression changes following ischemic stroke. These gene profiles predict a second cohort with >90% sensitivity and specificity. Gene profiles for ischemic stroke caused by large-vessel atherosclerosis and cardioembolism have been described that predict a second cohort with >85% sensitivity and specificity. Atherosclerotic genes were associated with clotting, platelets, and monocytes, and cardioembolic genes were associated with inflammation, infection, and neutrophils. These gene profiles predicted the cause of stroke in 58% of cryptogenic patients. These studies will provide diagnostic, prognostic, and therapeutic markers, and will advance our understanding of stroke in humans. New techniques to measure all coding and noncoding RNAs along with alternatively spliced transcripts will markedly advance molecular studies of human stroke

Research-policy partnerships - experiences of the Mental Health and Poverty Project in Ghana, South Africa, Uganda and Zambia

Background: Partnerships are increasingly common in conducting research. However, there is little published evidence about processes in research-policy partnerships in different contexts. This paper contributes to filling this gap by analysing experiences of research-policy partnerships between Ministries of Health and research organisations for the implementation of the Mental Health and Poverty Project in Ghana, South Africa, Uganda and Zambia. Methods: A conceptual framework for understanding and assessing research-policy partnerships was developed and guided this study. The data collection methods for this qualitative study included semi-structured interviews with Ministry of Health Partners (MOHPs) and Research Partners (RPs) in each country. Results: The term partnership was perceived by the partners as a collaboration involving mutually-agreed goals and objectives. The principles of trust, openness, equality and mutual respect were identified as constituting the core of partnerships. The MOHPs and RPs had clearly defined roles, with the MOHPs largely providing political support and RPs leading the research agenda. Different influences affected partnerships. At the individual level, personal relationships and ability to compromise within partnerships were seen as important. At the organisational level, the main influences included the degree of formalisation of roles and responsibilities and the internal structures and procedures affecting decision-making. At the contextual level, political environment and the degree of health system decentralisation affected partnerships. Conclusions: Several lessons can be learned from these experiences. Taking account of influences on the partnership at individual, organisation and contextual/system levels can increase its effectiveness. A common understanding of mutually-agreed goals and objectives of the partnership is essential. It is important to give attention to the processes of initiating and maintaining partnerships, based on clear roles, responsibilities and commitment of parties at different levels. Although partnerships are often established for a specific purpose, such as carrying out a particular project, the effects of partnership go beyond a particular initiative

Haemato-oncology and burnout: an Italian survey

This cross-sectional survey aimed to evaluate the prevalence of burnout and estimated psychiatric disorders among haemato-oncology healthcare professionals in Italy. The aspects of work that respondents perceive as stressful and satisfying have also been examined. The assessments were made using the Maslach Burnout Inventory (MBI), General Health Questionnaire and a study-specific questionnaire. Logistic regression models were applied to show associations between different sources of work-related stress and burnout. Three hundred and eighty-seven out of 440 (87.95%) returned their questionnaires. The scores on MBI subscales indicate a high level of emotional exhaustion in 32.2% of the physicians and 31.9% of the nurses; a high level of Depersonalisation in 29.8 and 23.6%, respectively; and a low level of personal accomplishment in 12.4 and 15.3% respectively. The estimated prevalence of psychiatric disorders was 36.4% in physicians and 28.8% in nurses. Statistical analysis confirmed age, sex, personal dissatisfaction, physical tiredness and working with demanding patients to be associated with burnout. In conclusion, haemato-oncology healthcare professionals report a level of burnout and estimated psychiatric morbidity comparable to other oncological areas. Knowledge of the mechanisms of burnout and preventing and dealing with them is therefore a fundamental requirement for the improvement of quality in health services and job satisfaction

Family food practices: relationships, materiality and the everyday at the end of life

This article draws on data from a research project that combined participant observation with in-depth interviews to explore family relationships and experiences of everyday life during life-threatening illness. In it I suggest that death has often been theorised in ways that make its ‘mundane’ practices less discernible. As a means to foreground the everyday, and to demonstrate its importance to the study of dying, this article explores the (re)negotiation of food and eating in families facing the end of life. Three themes that emerged from the study’s broader focus on family life are discussed: ‘food talk’ and making sense of illness; food, family and identity; and food ‘fights’. Together the findings illustrate the material, social and symbolic ways in which food acts relationally in the context of dying, extending conceptual work on materiality in death studies in novel directions. The paper also contributes new empirical insights to a limited sociological literature on food, families and terminal illness, building on work that theorises the entanglements of materiality, food, bodies and care. The article concludes by highlighting the analytical value of everyday materialities such as food practices for future research on dying as a relational experience

The multidimensional spectrum of imagination: Images, Dreams, Hallucinations, and Active, Imaginative Perception.

A theory of the structure and cognitive function of the human imagination that attempts to do justice to traditional intuitions about its psychological centrality is developed, largely through a detailed critique of the theory propounded by Colin McGinn. Like McGinn, I eschew the highly deflationary views of imagination, common amongst analytical philosophers, that treat it either as a conceptually incoherent notion, or as psychologically trivial. However, McGinn fails to develop his alternative account satisfactorily because (following Reid, Wittgenstein and Sartre) he draws an excessively sharp, qualitative distinction between imagination and perception, and because of his flawed, empirically ungrounded conception of hallucination. His arguments in defense of these views are rebutted in detail, and the traditional, passive, Cartesian view of visual perception, upon which several of them implicitly rely, is criticized in the light of findings from recent cognitive science and neuroscience. It is also argued that the apparent intuitiveness of the passive view of visual perception is a result of mere historical contingency. An understanding of perception (informed by modern visual science) as an inherently active process enables us to unify our accounts of perception, mental imagery, dreaming, hallucination, creativity, and other aspects of imagination within a single coherent theoretical framework