"Sleight of hand" or "Selling our sou"?: surviving and thriving as critical qualitative health researchers in a positivist world

The commodification and corporatization of research within the academy, research institutes, and professional and political sectors has ignited much attention within the critical qualitative health field. Of particular concern is that the ascendance of neoliberal rationality is increasingly making critical qualitative research transgressive and difficult to practice. We reflect on this concern by deconstructing our experiences collaborating with large teams of interdisciplinary researchers. We offer interpretation of key events, interactions, processes, and existential and material consequences, and discuss lessons learned and productive strategies for working at the margins of the health sciences. We argue for the need to engage in a comprehensive resistance agenda in order for critical qualitative health researchers to not only survive but also thrive in the health field.Die Kommodifizierung und Verkörperschaftlichung der Hochschulen, Forschungseinrichtungen und von Praxis und Politik hat im Bereich qualitativer Gesundheitsforschung sehr viel Aufmerksamkeit erfahren. Besonders kritisch ist, dass das Überhandnehmen neoliberaler Rationalität eine kritische qualitative Forschungspraxis zunehmend erschwert. Wir reflektieren dies durch den Rückgriff auf eigene Erfahrungen im Rahmen großer interdisziplinärer Forschungsteams, indem wir Schlüsselereignisse, Interaktionen und Verläufe sowie deren existenzielle und materielle Konsequenzen interpretieren und produktive Strategien an den Rändern der Gesundheitswissenschaften diskutieren. Uns liegt am Herzen, uns für eine umfassende Widerstandsagenda zu engagieren, die nicht nur das Überleben, sondern auch die Blüte qualitativer Gesundheitsforschung zum Ziel hat

An Exploration of Experiences of Transdisciplinary Research in Aging and Technology

Transdisciplinary research (TDR) involves academics/scientists collaborating with stakeholders from diverse disciplinary and sectoral backgrounds. While TDR has been recognized as beneficial in generating innovative solutions to complex social problems, knowledge is limited about researchers' perceptions and experiences of TDR in the aging and technology field. We conducted a qualitative study to address this knowledge gap by exploring how members of a pan-Canadian research network on aging and technology perceived and experienced TDR. Thirty members participated in semi-structured interviews. Interview data were analyzed thematically. Participants identified benefits that can be gained from implementing TDR, including mutual learning, improved capacity to understand and solve problems, and community engagement and empowerment. Participants also identified challenges to implementing TDR: communication issues and conflicting priorities among team members; tensions between traditional and TDR approaches; and difficulties identifying partners and developing partnerships. In addition, contradictions between TDR principles and participants' understanding of them became apparent. Nevertheless, some participants described successful strategies for implementing transdisciplinary principles in their projects: stakeholder engagement; language and goal sharing; and open, respectful communication. We offer recommendations to support TDR in aging and technology that focus on education and reform of the culture and values that can constrain efforts to practice TDR.Im Rahmen transdisziplinärer Forschung (TDF) arbeiten Wissenschaftler*innen mit Stakeholdern unterschiedlicher disziplinärer und sektoraler Herkunft zusammen. Während es mittlerweile akzeptiert scheint, dass TDF hilfreich ist, um innovative Lösungen für komplexe soziale Probleme zu generieren, ist das Wissen um Wahrnehmungen und Erfahrungen transdisziplinärer Forscher*innen im Bereich Alter(n) und Technologie vergleichsweise gering. Mittels einer qualitativen Studie mit Mitgliedern eines Pan-Kanadischen Forschungsnetzwerks haben wir versucht, diese Wissenslücke zu schließen. Mit 33 Mitgliedern des Netzwerkes wurden teilstrukturierte Interviews geführt, die thematisch analysiert wurden. Zu den berichteten Benefits von TDF gehörten u.a. wechselseitiges Lernen, verbesserte Möglichkeiten zum Verstehen und Lösen von Problemen  sowie Zugehörigkeit zu und Einbettung in die jeweilige Community. Erlebte Herausforderungen betrafen insbesondere kommunikative Schwierigkeiten und Prioritätskonflikte im Team, Spannungen zwischen Vertreter*innen von traditionellen vs. TDF-Ansätzen sowie Hindernisse beim Identifizieren von potenziellen Partner*innen. Zusätzliche waren Widersprüche zwischen TDF-Prinzipien und deren Verständnis durch die Interviewten offensichtlich. Einige der Gesprächspartner*innen haben gleichwohl Strategien beschrieben, die auf eine erfolgreiche Implementierung transdisziplinärer Prinzipien verweisen, nämlich das Engagement von Stakeholdern, das Teilen von Zielen und Sprachen sowie eine offene, respektvolle Kommunikation. Hiervon ausgehend bieten wir Empfehlungen für TDF zu Alter(n) und Technologie mit einem Fokus auf Bildung und auf eine Reform von Kulturen und Werten, die in der Praxis Bemühungen um TDF entgegenstehen

Dementia Discourse: From Imposed Suffering to Knowing Other-Wise

This work, first published in Journal of Applied Hermeneutics is made available here under the Creative Commons Attribution 3.0 Unported license. https://creativecommons.org/licenses/by/3.0/. Original article available at: http://hdl.handle.net/10515/sy5222rn5The authors revisit the troubling discourse surrounding the diagnosis of dementia. A critique of the predominant words and images in health care literature, public discourse, and policy is considered from multiple angles. The authors link the dominant words and images with a form of inter-relational violence. Contrary images grounded in research and experience offer a different view of what it is like to live with a diagnosis of dementia—a view that is life-affirming and based in relationality and possibility. Concepts of embodied selfhood and knowing other-wise are portrayed as doorways to transforming a discourse of violence toward a discourse of compassion and ethical relating

Knowledge as Embodied, Imaginative and Foolish Enactment: Exploring Dementia Experiences through Theater

In this article, we provide an example of a performance-research project to advance understandings of the ways artistic and scientific processes work in conversation. Drawing on the research-informed play Cracked: New Light on Dementia, we consider the interrelationship among cultural narratives (including the perpetuation of oppressive narratives of marginalized people), aesthetic and artistic exploration (sensory and emotional exploration together with dramaturgy and theatricality), and social critique for the purposes of broader social change. By explicating three interrelated "acts" of our process, including preparation, execution and exhibition (THOMPSON, 2015), we share the ways artistic practices were flexibly used to generate new cultural knowledge about the ways we think, feel, and sense about dementia to mobilize social good. With our work we criticize institutional and research structures that deny arts processes the status of "research," as well as challenge traditional modes of knowledge and knowledge production.In diesem Beitrag berichten wir über ein Beispiel performativer Forschung mit dem Ziel, künstlerische und wissenschaftliche Prozesse besser zu verstehen. Ausgehend von dem Theaterstück "Cracked: New Light on Dementia" beleuchten wir die Beziehung zwischen kulturellen Narrativen (inkl. der Verfestigung unterdrückerischer Narrative über marginalisierte Menschen), ästhetischer und künstlerischer Forschung (sensorisches und emotionales Involvement sowie Dramaturgie und Theatralität) und sozialer Kritik mit dem Ziel breiterer sozialer Veränderungen. An drei miteinander verknüpften "Akten" unseres Forschungsprozesses - Vorbereitung, Ausführung und Ausstellung (THOMPSON 2015) - veranschaulichen wir, wie künstlerische Praktiken flexibel genutzt wurden, um neues kulturelles Wissen darüber zu erzeugen, wie wir Demenz denken, erleben und wahrnehmen, und so ein soziales Gut zu initiieren. Mit unserer Arbeit kritisieren wir institutionelle und wissenschaftliche Strukturen, die Kunst den Status von Forschung absprechen, und wir fordern traditionelle Weisen von Wissen und Wissensproduktion heraus

Barriers and facilitators to person-centred infection prevention and control: results of a survey about the Dementia Isolation Toolkit

Objectives: People working in long-term care homes (LTCH) face difficult decisions balancing the risk of spread of infection with the hardship that infection control and prevention (ICP) measures put on residents. The Dementia Isolation Toolkit (DIT) was developed to address the gap in ethical guidance on how to safely and effectively isolate people living with dementia while supporting their personhood. In this study, we report the results of a survey of LTCH staff on barriers and facilitators regarding isolating residents, and on the use and impact of the DIT. Design: Online survey. Setting and Participants: Participants (n=208) were staff working on-site in LTCH in Ontario, Canada since March 1, 2020, with direct or indirect experience with the isolation of LTCH resi-dents. Methods: LTCH staff were recruited through provincial LTCH organizations, social media, and the DIT website. Survey results were summarized, and three groups compared, those: 1) unfamiliar with, 2) familiar with, and 3) users of the DIT. Results: 61% of respondents identified distress of LTCH staff about the harmful effects of isola-tion on residents as a major barrier to effective isolation. Facilitators for isolation included delivery of 1:1 activity in the resident’s room (81%) and designating essential caregivers to provide support (67%). Almost all respondents (84%) reported an increase in moral distress. DIT users were less likely to report an impact of moral distress on job satisfaction (OR 0.41, 95% CI 0.19-0.87) with 48% of users reporting it was helpful in reducing their level of distress. Conclusions and Implications: Isolation as an ICP measure in LTCH environments creates mor-al distress in staff which is a barrier to its effectiveness. ICP guidance to LTCH would be strength-ened with the inclusion of a dementia-specific ethical framework that addresses how to minimize the harms of isolation on both residents and staff

Prevalence, causes, and consequences of moral distress in healthcare providers caring for people living with dementia in long-term care during a pandemic

Healthcare providers caring for people living with dementia may experience moral distress when faced with ethically challenging situations, such as the inability to provide care that is consistent with their values. The COVID-19 pandemic produced conditions in long-term care homes (LTCHs) that could potentially contribute to moral distress. We conducted an online survey to examine changes in moral distress during the pandemic, its contributing factors and correlates, and its impact on the well-being of LTCH staff. Survey participants (n=227) working in LTCHs across Ontario, Canada were recruited through provincial LTCH organizations. Using a Bayesian approach, we examined the association between moral distress and staff demographics and roles, and characteristics of the LTCH. We performed a qualitative analysis of the survey's free-text responses. More than 80% of LTCH healthcare providers working with people with dementia reported an increase in moral distress since the start of the pandemic. There was no difference in the severity of distress by age, sex, role, or years of experience. The most common factors associated with moral distress were lack of activities and family visits, insufficient staffing and high turnover, and having to follow policies and procedures that were perceived to harm residents with dementia. At least two-thirds of respondents reported feelings of physical exhaustion, sadness/anxiety, frustration, powerlessness, and guilt due to the moral distress experienced during the pandemic. Respondents working in not-for-profit or municipal homes reported less sadness/anxiety and feelings of not wanting to go to work than those in for-profit homes. Front-line staff were more likely to report not wanting to work than those in management or administrative positions. Overall, we found that increases in moral distress during the pandemic negatively affected the well-being of healthcare providers in LTCHs, with preliminary evidence suggesting that individual and systemic factors may intensify the negative effect

On the notion of home and the goals of palliative care

The notion of home is well known from our everyday experience, and plays a crucial role in all kinds of narratives about human life, but is hardly ever systematically dealt with in the philosophy of medicine and health care. This paper is based upon the intuitively positive connotation of the term “home.” By metaphorically describing the goal of palliative care as “the patient’s coming home,” it wants to contribute to a medical humanities approach of medicine. It is argued that this metaphor can enrich our understanding of the goals of palliative care and its proper objectives. Four interpretations of “home” and “coming home” are explored: (1) one’s own house or homelike environment, (2) one’s own body, (3) the psychosocial environment, and (4) the spiritual dimension, in particular, the origin of human existence. Thinking in terms of coming home implies a normative point of view. It represents central human values and refers not only to the medical-technical and care aspects of health care, but also to the moral context