"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

Addressing the Black Box of AI – A Model and Research Agenda on the Co-Constitution of Aging and Artificial Intelligence

Algorithmic technologies and (large) data infrastructures, often referred to as Artificial Intelligence (AI), have received increasing attention from gerontological research in the last decade. While there is much literature that dissects and explores the development, application, and evaluation of AI relevant for gerontology, this article makes a novel contribution by critically engaging with the theorizing in this growing field of research. We observe that gerontology’s engagement with AI is shaped by an interventionist logic that situates AI as a black box for gerontological research. We demonstrate how this black box logic has neglected many aspects of AI as a research topic for gerontology and discuss three classical concepts in gerontology to show how they can be used to open various black boxes of aging and AI in the areas: a) the datafication of aging, b) the political economy of AI and aging, and c) everyday engagements and embodiments of AI in later life. In the final chapter, we propose a model of the co-constitution of aging and AI that makes theoretical propositions to study the relational terrain between aging and AI and hence aims to open the black box of AI in gerontology beyond an interventionist logic

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

Que(e)ring Home Care: Older Lesbian and Bisexual Women's Experiences of Accessing and Receiving Care Services

This exploratory study examined the impact of sexuality, gender and aging on older lesbian and bisexual women’s access to home care services and their experiences of receiving home care. This study had three objectives: (1) to learn about the experiences of older lesbian and bisexual women who currently access home care services in Ontario, (2) to gain an understanding of the impact of sexuality and sexual orientation on home care experiences, and (3) to explore older lesbian and bisexual women’s definitions of quality home care and the factors that enable (or hinder) quality care. This study used a qualitative case study design and was guided by a feminist political economy framework and the critical sexuality and LGBTQ studies literature. Semi-structured interviews were carried out with 16 women who have accessed home care services in Ontario in the last five years. These interviews were subsequently transcribed and analyzed using an iterative thematic analysis. The findings of this thesis reveal that attitudes around gender, sexuality and sexual practices affect individuals’ need for home care, their access to care and their experiences of receiving home care. This study highlights the necessity of incorporating a consideration of gender, sexuality and sexual orientation into home care policy and delivery, as well as into the training of home care workers and case managers. These findings may be useful in the development of respectful and effective home care services that are sensitive to diverse experiences and to those of lesbian and bisexual families

Governing 'risky' sexualities: Representation of dementia and sexuality in the news media

Drawing on critical scholarship on sexuality, disability and gerontology, this paper examines representations of dementia and sexuality across recent North American, European and Australian news media sources. Attending to the affects mobilized within these representations demonstrates how they support the constitution of the sexualities of persons with dementia as dangerous, and thus as requiring surveillance and restriction. I argue that the media stigmatizes persons with dementia by constructing them as either sexual predators or asexual victims. The first construct explicitly incites disgust and fear towards the sexualities of men with dementia, while the second elicits a superficial form of caring towards women with dementia. Such representations preclude the recognition and support of the sexual rights of persons with dementia, including their right to experience sexual pleasure