The Times of Caring in a Nuclear World: Sculpture, Contamination and Stillness

Care takes time. Caring, whether with, for, or about a living being or entity that is more-than-human, disrupts expectations of how a linear, human time should progress. To practice care for the contaminated, the lands, waters, and animate life altered by human industry, is to extend that indeterminacy into distant, deeper time. Aesthetic representation of the affective and ethical dimensions of care, in this extreme, offers an experience that can transfer the arguments about nuclear contamination into more nuanced and sensed responses and contributes to current thinking about care in the arts worlds. I was commissioned to make a sculpture exhibition in 2020 as part of an anthropological study into the future of the Sellafield nuclear site in West Cumbria, UK. The exhibition, ‘x = 2140. In the coming 120 years, how can humans decide to dismantle, remember and repair the lands called Sellafield?’, consisted of three sculptural ‘fonts’ which engaged with ideas of knowledge production, nuclear technologies, and the affective dimensions of care about/for/with the contaminated lands and waters. This article presents my intentions for the sculptures in their context of a nuclear-dependent locale: to engage with the experience of nuclear futures without adversarial positioning; to explore the agential qualities of the more-than-human; and to create a stillness expressive of the relationality of the human and the contaminated through which one could fathom what care might feel like. These intentions are alongside theories of time, aesthetics, and care across disciplines: care and relational ethics, science and technology studies, and nuclear culture.

Clinician views on best practice community care for people with complex emotional needs and how it can be achieved: a qualitative study

Background Service provision for people with complex emotional needs (CEN) is recurrently identified as needing to be transformed: there are serious concerns about quality, accessibility, fragmentation of the service system and the stigma and therapeutic pessimism service users say they encounter. We use the term CEN as a working description to refer to the needs experienced by people who may have been diagnosed with a "personality disorder". Understanding clinician perspectives is vital for service transformation, as their views and experiences shed light on potential barriers to achieving good care, and how these might be overcome. In this study, we aimed to explore these views. Methods We used a qualitative interview design. A total of fifty participants from a range of professions across specialist and generic community mental health services across England who provide care to people with CEN took part in six focus groups and sixteen one-to-one interviews. We analysed the data using a thematic approach. Findings Main themes were: 1) Defining Best Practice, 2) Facilitators of Best Care, 3) Barriers to Best Care, 4) Systemic Challenges. Across these themes, staff highlighted in particular the need for care that was person-centred, relational, empathic, and trauma informed. However, major barriers to achieving this are stigmatising attitudes and behaviour towards people with CEN, especially in generic mental health services, lack of development of coherent service systems offering clear long-term pathways and ready access to high quality treatment, and lack of well-developed structures for staff training and support. Discussion Overall, the findings point towards clinician views as generally congruent with those of service users, reinforcing the need for priorities towards systemwide change to ensure that we can provide the best practice care for these individuals. Particularly prominent is the need to put in place system-wide training and support for clinicians working with CEN, encompassing generic as well as specialist services, and to challenge the stigma still experienced throughout the system. Conclusions Staff working with this service user group report that delivering best practice care services to be flexible, integrated, and sustainably funded, and for staff to be supported through ongoing training and supervision.

Neurologists rarely perform genetic testing for Parkinson's disease. Evidence suggests that many patients with major genetic variants go undiagnosed

This review addresses the past and current states of genetic testing for Parkinson's disease based on the available data. In short, neurologists rarely perform genetic testing for Parkinson's disease, and evidence suggests that many patients with major genetic variants go undiagnosed. For patients, caregivers, and families, we looked into the various clinical and personal applications of genetic information. Consumer interest and demand for genetic testing in general, and for Parkinson's disease in particular, is increasing. Furthermore, researchers now have a better understanding of the genetic phenotypes of Parkinson's disease; there is more access to free or low-cost genetic testing and counseling; and patients with specific PD genetic variants can now participate in interventional clinical trials. All of these developments highlight the importance of expanding genetic testing for Parkinson's disease. By addressing perceived barriers and providing practical information and resources, we hope to increase clinician comfort and confidence, allowing them to offer more PD genetic testing in their practices. We can provide tailored information specific to the patient by entering the realm of personalized medicine, which, as other specialties have done, may result in improvements in clinical practice, care, and outcomes. Expanding PD genetic testing, on the other hand, will necessitate the collaboration of a group of medical experts and key stakeholders, particularly genetic counselors, who are already experts at guiding patients through complex genetic information and, more importantly, in the context of their psychological states.

Experiences of general practice care for self-harm: a qualitative study of young people's perspectives

Background: Self-harm is a growing concern and rates of self-harm in young people presenting to general practice are rising. There is however an absence of evidence on young people’s experiences of GP care and on accessing general practice. Aim: To explore the help-seeking behaviours, experiences of GP care, and access to general practice for young people who self-harm. Design and setting: Semi-structured interviews were conducted with young people aged 16-25 from England with previous self-harm behaviour. Method: Interviews with 13 young people occurred between April and November 2019. Young people were recruited from the community, third-sector organisation, and Twitter. Data were analysed using reflexive thematic analysis with principles of constant comparison. A patient and public involvement advisory group informed recruitment strategies and supported interpretation of findings. Results: Young people described avenues of help-seeking they employ and reflected on mixed experiences of seeing GPs which can influence future help-seeking. Preconceptions and a lack of knowledge on accessing general practice were found to be barriers to help-seeking. GPs who attempted to understand the young person and establishing relationship-based care can facilitate young people accessing general practice care for self-harm. Conclusion: It is therefore important young people are aware how to access general practice care and that GPs listen, understand, and proactively follow-up young people who self-harm. Supporting young people with self-harm behaviour requires continuity of care.

Essential competencies for physical therapist managing individuals with spinal muscular atrophy: A delphi study

Background and purpose With the availability and development of disease-modifying therapies for individuals with spinal muscular atrophy (SMA), new emerging phenotypes must be characterized, and potential new treatment paradigms tested. There is an urgent demand to develop an educational program that provides physical therapists (PTs) worldwide the necessary knowledge and training to contribute to best-practice care and clinical research. A competency based education framework is one that would focus on outcomes not process and where progression of learners would occur only after competencies are demonstrated. The first step toward such a framework is defining outcomes. The purpose of this Delphi study was to develop consensus on those competencies deemed essential within the SMA PT community. Methods Purposive selection and snowball sampling techniques were used to recruit expert SMA PTs. Three web-based survey rounds were used to achieve consensus, defined as agreement among >80% of respondents. The first round gathered demographic information on participants as well as information on clarity and redundancy on a list of competencies; the second round, collected the same information on the revised list and whether or not participants agreed if the identified domains captured the essence of a SMA PT as well as the definitions for each; and the third asked participants to rank their agreement with each competency. Results Consensus revealed 35 competencies, organized under 6 domains, which were deemed essential for a PT working with persons with SMA. Discussion In order to develop a curriculum to meet the physical therapy needs of persons with SMA, it is imperative to establish defined outcomes and to achieve consensus on those outcomes within the SMA community. Conclusions This study identified essential competencies that will help to provide guidance in development of a formal education program to meet these defined outcomes. This can foster best-practice care and clinical decision-making for all PTs involved in the care of persons with SMA in a clinical and research setting.

Commodification and care: An exploration of workforces’ experiences of care in private and public childcare systems from a feminist political theory of care perspective

Drawing on feminist care ethics and political theory (Engster and Hamington, 2015; Held, 2006; Noddings, 2015; Tronto, 2013), this paper examines how educators working in private (Ontario) and public (Denmark) childcare systems think about and practice care. Through interviews with pedagogues (Denmark) and early childhood educators (Ontario), linkages between the public/private positioning of care and the care experiences of educators are explored. The findings reveal differences in how educators think about and practice care in public and private systems. At the same time, notable similarities emerged in how educators resisted neoliberal system requirements. The findings illustrate the complexities of connecting good care practices to the systemic level without diminishing the importance of individual human agency in experiencing/practicing good care in Early Childhood Education and Care (ECEC). Findings suggest that good care and commodification are both theoretically and practically at odds with each other, though neither absolutely precludes the other. Implications for policy makers, particularly relevant in the contemporary COVID context, are discussed.