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Purpose: The purpose of this study is to assess the effect of social isolation of minors with a parent or grandparent suffering from amyotrophic lateral sclerosis (ALS) and to determine whether the psychological support offered by an Italian no-profit association helped them to manage stress.

Methodology: This study followed a qualitative research design. The participants responded to in-depth interviews that were processed with inductive thematic analysis.

Findings: Five themes emerged: feedback on the psychological intervention; learning and changes after the intervention; discourses on illness and death in the family; experiences and difficulties during the lockdown and suggestions for other peers who might face the same situation.

Social Implications: Psychological support is necessary for these minors, and it helped them to manage both the stress of living with ALS and the limitations of social relationships during the pandemic. It showed the importance of authentic and honest communication about illness and death that allowed minors to manage anxiety and fear. Positive reinterpretation of these experiences by transforming them into opportunities was also revealed.

Originality: Studies on families with ALS patients are numerous, but studies on children of these patients are still rare, and no study has investigated the impact of the COVID-19 pandemic on these children. This research investigated a topic that has not been covered previously and it also provided the opportunity to know how these children, preadolescents and adolescents living in an already complex environment, have experienced lockdown and restrictions. The study also enriched the literature on this important issue.

All over the world, different types of disabilities affect people and their quality of life. And schools, families, and federal and state agencies are obligated to play very important roles in advancing special education values for students with physical and other health impairments. To maintain and advance these values, the needs of students must be met to the greatest extent possible. Advancing values comes with recognizing the strengths, preferences, interests, related services, community experiences, development of employment, other postschool adult living objectives, and the acquisition of daily living skills. The question is, are these values consistently met, especially for students with physical and other health impairments? This chapter answers this question by discussing how these values can be met and advanced for students with physical and other health impairments.

The research for this study engages and assesses the relationship of the media from the 20th to the 21st century, combining scholar activism and public leadership in the disability rights movement. Having chronicled the disability rights movement from its roots, this chapter presents the discourse of media and movement, sampling mainstream media along with the advocacy and alternative media in support of disability rights. A range of media forms are engaged from advocacy bulletins to mainstream news media to public broadcasts that represent the diversity and complexity of the movement as it continues into the 21st century, pressing for the universalism of human rights for all.

Theories of platform strategy and adoption have been largely derived from studies of their application in the information and communications technology (ICT) sector. These platforms vary in openness, with the model of open source software providing the best-known exemplar for open platforms.

This exploratory field study examines the degree to which nine attributes of ICT platforms are applicable to open platforms in biotechnology. Using a combination of interview and secondary data, it identifies three patterns of such biotechnology platforms – IP commons, hackerspaces, and crowdsourced patient registries – and the degree to which these nine attributes apply. It shows the impact of ICT platforms and open source software on open source approaches to biotechnology, and how the latter are affected by the technical, legal, and institutional differences between information technology and biotechnology.

Instead of open source software platforms organized around modular interfaces, complements, ecosystems, and two-sided markets, this study instead suggests a model of open source knowledge platforms which benefits from economies of scale but not indirect network effects. From this, it discusses the generalizability of the ICT-derived models of open source platforms and offers suggestions for future research.

The purpose of this paper is to determine if issues relevant to multidisciplinary rehabilitation care from the perspective of the patient and caregiver can be addressed utilising the International Classification of Functioning, Disability and Health (ICF) framework; also to identify gaps in evidence and service provision to optimise clinical care.

Participants with motor neurone disease (MND) (n=44) and their caregivers (n=37) were recruited from a tertiary MND clinic. Cross‐sectional predominantly qualitative methodology was used to explore the perspectives of MND patients and their caregivers on disability and service gaps. Their disability experience and relevant environmental factors were then mapped onto the ICF framework. Personal factors were described. The impact of MND on caregivers was also described.

There were significant gaps in MND care. In particular, the need for coordinated care by neurology, rehabilitation and palliative care services (“neuropalliative rehabilitation” model) was highlighted. The ICF framework adequately incorporated patient‐and caregiver‐ reported disability in MND.

This is the first review that the authors can identify, that lays the foundation for development of an ICF “Core set” (expert‐selected ICF categories that should be addressed in multidisciplinary care settings) for MND, which could improve consensus of care and communication amongst treating clinicians.

This chapter presents an exploration of the phenomenon of speaking with, or perhaps better stated “through,” a device. Autobiographical works and other published accounts of perceptions of Speech-Generating Devices (SGDs) by persons who have used them are reviewed. The bulk of the chapter focuses on insights gathered from research into the lived experiences of young people who use SGDs. Emerging themes focus on what is “said” by a person who cannot speak, how SGDs announce one’s being in the word, the challenge of one’s words not being one’s own, and the constant sense of being out of time. Reflections on these themes provide insights for practice in the fields of speech language pathology, education, and rehabilitation engineering. The importance of further qualitative inquiry as a method to gather and listen to the voices and experiences of these often unheard individuals is stressed.

This chapter analyzes the campaign against race norming in the 2013 National Football League (NFL) concussion settlement that caregivers of retired players designed, and it considers how their collective action throws new light on activism in sport. While there is a substantial literature on how individual athletes engage in protest, less work has focused on how families – partners, children, siblings, and parents – of athletes organize as a group to answer back to anti-Black racism in professional sport. I argue that a group of spouses used their position as caregivers to shame the NFL, the presiding judge of the settlement, Class Counsel, and even the Department of Justice into acknowledging not only individual suffering from traumatic brain injury but also of the distribution of that suffering across households. Specifically, the wives group expanded definitions of risk and damage to include not only individual illness but also family and group suffering and demanded inclusion of gendered and racialized aspects of social care. Through their campaign, the group recast what is considered protest in the world of sport and who has the ability to access an activist subjectivity.

The purpose of this paper is to explore how accounting and control practices contribute to the persistence of the multiple logics that characterise hybrid organizations, i.e. organizations that constantly incorporate elements from different institutional logics at the very core of their identity.

The authors draw on the literature regarding institutional logics and on studies exploring the enabling power of accounting to interpret the findings derived from a longitudinal case study of a hybrid organization operating in the field of brain-computer interface technology.

The study shows that the persistence of conflicting logics and innovation within hybrid organizations can be sustained through the mediating role of accounting and control practices. By engaging different interested parties within processes of innovation, these practices can establish complex interconnections between conflicting perspectives and their objects of concern. Consequently, accounting and control do not address a specific logic but instead contribute to lock different parties to their own logic, allowing them to engage and generate innovation while maintaining their diversity.

Whereas previous studies have explored mechanisms for keeping the multiple logics of hybrids separate or for reconciling them, the paper shows that conflicts between these logics do not need to be reduced but can be mediated to generate innovation. Additionally, the authors contribute to the literature on accounting “in action”, by illustrating the role of accounting and control practices as boundary objects that act within a broader “ecology of objects” through which innovation materializes in a context of enduring institutional pluralism.