Coping in the time of COVID-19: Insights from university students with intellectual disabilities.

Background: For almost two decades, students with intellectual, developmental and multiple disabilities have attended undergraduate classes at the University of Manitoba, in Winnipeg, Canada as part-time auditing students. They are supported by the Campus Life program. Campus Life employs graduate and undergraduate university students as academic tutors and social role models because they too are immersed in university life. Methods: We chose collaborative autoethnography as a research method because we believe in researching and writing with individuals with disabilities, rather than about them. Three student tutor dyads elected to participate in this study. In the context of the pandemic and the switch from on-campus in-person learning to off-campus online learning, we were interested in learning about the changes, challenges or unanticipated benefits they experienced. Each dyad engaged in tutor-led conversations, guided by open-ended questions, and wrote their story. Findings: The stories from the three dyads were received and analysed. We found three emergent themes. The first was centred on worries about the health risks of COVID-19, the difficulties they experienced in adapting to online learning and their development of better skills in listening and communicating. The second theme was about the dramatic reduction in their opportunities for social engagement. With respect to the third emergent theme, they recounted some advantages of online learning, noting that it was more accessible, more convenient and safer during a pandemic. Conclusion: For the study participants the shift to online classes and tutoring sessions was surprisingly successful. They became more independent and improved their online communication, time-management and organisational skills. Social engagement was sorely missed, especially studying and socializing with classmates at university and participating in extracurricular activities. The students also noted some advantages to online learning such as accessibility, convenience, feeling comfortable at home, avoiding transportation to the university and learning to use new tech tools. The tutors began sharing and learning from each other. This was facilitated by online tutoring roundtables. Our first insight from this study is the realisation that we now have a new medium for tutoring Campus Life students. A second is the need to better understand student social engagement in the online world.

Participatory action as a research method with public health nurses.

AIM: This article explores and describes participatory action research (PAR) as a preferred method in addressing nursing practice issues. This is the first study that used PAR with public health nurses (PHNs) in Canada to develop a professional practice model. BACKGROUND: Participatory action research is a sub-category of action research that incorporates feminist and critical theory with foundations in the field of social psychology. For nurses, critical analysis of long-established beliefs and practices through PAR contributes to emancipatory knowledge regarding the impact of traditional hierarchies on their practice. DESIGN: This study used participatory action, a non-traditional but systematic research method, which assisted participants to develop a solution to a long-standing organizational issue. METHOD: The stages of generating concerns, participatory action, acting on concerns, reflection and evaluation were implemented from 2012 - 2013 in an urban Canadian city, to develop a professional practice model for PHNs. FINDINGS: Four sub-themes specific to PAR are discussed. These are "participatory action research engaged PHNs in development of a professional practice model;" "the participatory action research cycles of "Look, Think, Act" expanded participants' views;" "participatory action research increased awareness of organizational barriers;" and "participatory action research promoted individual empowerment and system transformation." CONCLUSIONS: This study resulted in individual and system change that may not have been possible without the use of PAR. The focus was engagement of participants and recognition of their lived experience, which facilitated PHNs' empowerment, leadership and consciousness-raising.

Reorienting Public Health Nurses' Practice With a Professional Practice Model.

Purpose Documents articulating public health nurses' (PHNs') roles, including Canadian standards and competencies, depict a broad focus working at multiple levels to improve population outcomes through the promotion of health equity. Conversely, Canadian experts depict a looming crisis, based on the rising disconnect between daily activities and ideal practice. While perfectly positioned, PHNs' skills and abilities are under-utilized and largely invisible. The intention of this study was to develop a model to support the full scope of equity-focused PHN practice. Method A participatory action research approach was used. Qualitative data were gathered using semistructured interview guides during audio-recorded meetings. The data were coded into central themes using content analysis and constant comparison. A researcher reflexive journal and field notes were kept. A significant feature was full participant involvement. Results The outcome was a professional practice model to reframe the PHN role to focus on population health and equity. The model was imperative in promoting full scope of practice, dealing with workload pressures, and describing PHNs' value within the organization and broader health system. Conclusion Professional practice models hold promise as frameworks to depict autonomous practice activities, situated within organizations and healthcare systems, and underpinned by nursing knowledge.

Nursing educators' perspectives of students with disabilities: a grounded theory study.

The purpose of this grounded theory study was to increase understanding of nursing educators' perspectives of students with disabilities. Seventeen educators from four nursing education programs in western Canada participated. The theory emerging from this data was "producing competent graduates". The central category was supporting students to become competent graduates. This paper focuses on the nursing educators' perspectives of students with disabilities, which influenced their efforts to support students with disabilities on that path.

Making "ethical safe space" in the translation of contested knowledge: the role of community debate in defining end-of-life decision ethics.

OBJECTIVE: The objectives of this article are, first, to document a unique process of research knowledge translation (KT), which the authors describe as the creation of "ethical safe space," and, second, to document the narratives of forum participants and describe their interaction in a dialogue about vulnerability, the authority of physicians, and the perspective of people with disabilities on the policy. METHOD: Narrative data from qualitative interviews with individual key informants and focus groups were used to identify speakers with specific expertise on policy, disability perspectives, and bioethical issues, who were invited to participate in the Forum on Ethical Safe Space. The planning workgroup adopted a model for enabling representative participation in the public forum designed to reduce the impact of physical, sensory, financial, language, and professional status barriers. Using the transcripts and keynote speakers' printed texts, primary themes and patterns of interaction were identified reflecting the alternative perspectives. Through the development of a workshop on ethical, legal, and disability-related implications of professional policy guidelines developed by the College of Physicians and Surgeons of Manitoba, we provided a qualitative analysis of the discourse involving experts and disability community members supporting alternative positions on the impact of the policy statement, and discuss ethical, legal, and disability rights issues identified in the public debate. RESULTS: Contested policy and ethical frameworks for making decisions about withdrawing and withholding life supporting treatment may influence both the perspectives of palliative care providers and patients referred to palliative care facilities. An innovative model for KT using a public forum that enabled stakeholders with conflicting perspectives to engage with ethical and professional policy issues asserting the physician's authority in contested decisions involving withdrawing or withholding life-supporting treatment, was a successful way to engage stakeholders supporting alternative positions on the impact of the policy statement and to discuss ethical, legal, and disability rights issues identified in the public debate. SIGNIFICANCE OF RESULTS: Discussion during the forum revealed several benefits of creating ethical safe space. This model of workshop allows space for participation of stakeholders, who might not otherwise be able to interact in the same forum, to articulate their perspectives and debate with other presenters and audience members. Participants at the forum spoke of the creation of ethical safe space as a starting point for more dialogue on the issues raised by the policy statement. The forum was, therefore, seen as a potential starting point for building conversation that would facilitate revising the policy with broader consultation on its legal and ethical validity.

"In pain waiting to die": everyday understandings of suffering.

OBJECTIVE: The notion of "suffering" is understood in very different ways in a variety of contexts. In palliative care, the relief and prevention of suffering is considered to be a fundamental goal (Pastrana et al., 2008). However, the avoidance of suffering has also been used as an argument by those campaigning for the legalization of euthanasia and assisted suicide (Finlay, 2009). In reflecting upon suffering in these two contexts, we were intrigued by Finlay's (2009) contention that to laypeople, the phrase "'unbearable suffering' conjures up images of patients on their deathbeds wracked with uncontrolled pain" (p. 1841). METHOD: This article explores how suffering is used and understood in an "everyday" discourse, by analyzing comments posted to a website debating assisted suicide in the context of the Canadian case of Sue Rodriguez. RESULTS: Using a broad social approach to discourse analysis (Tonkiss, 2004), three themes emerged in our analysis: (1) when people suffer, (2) how people are understood to suffer, and (3) how suffering should be dealt with. We also examined what was not said in this discussion: there was little consideration of the more holistic goals of palliative care and how suffering might be understood and managed in ways other than within the frame of assisted suicide. SIGNIFICANCE OF RESULTS: Paying attention to the everyday discourse of suffering is important because, as members of society, we all play a role in negotiating the meaning of suffering. Such meaning has a significant impact upon patients and palliative care professionals alike.

End-of-life ethics and disability: differing perspectives on case-based teaching.

The way in which medical professionals engage in bioethical issues ultimately reflects the type of care such patients are likely to receive. It is therefore critical for doctors and other health care professionals to have a broad understanding of disability. Our purpose in this paper is to explore ways of teaching bioethical issues to first year medical students by integrating alternative approaches. Such approaches include (a) the use of the narrative format, (b) the inclusion of a disability perspective, and (c) the presentation and facilitation of classes by people with disabilities. We consider how these new kinds of presentations are evaluated by students, faculty, people with disabilities and professional ethicists. We hope new knowledge may provide health care professionals with a greater understanding of the perspectives of patients with disabilities, who are confronted by conflicting ethical values and frameworks for decision-making in their interaction with such professionals.