Ryan DeForge

Making care decisions in home-based dementia care: Why context matters

D’ici à 2038, le nombre d’heures de soins non rémunérées aux aînés offert par les membres de la famille devraient tripler. Les membres des familles sont souvent suppliés d’aider dans le processus parce que vivre avec la démence peut inhiber la capacité pour prendre une décision. Cette étude ethnographique a soumis les relations au sein de soins de la démence à domicile à un examen critique par le biais des entrevues face-à-face et les observations des participants des clients, des aidants naturels et des prestataires de soins à domicile. Les résultats ont révélé comment les décisions sont imposées dans le contexte du système de soins à domicile formels, et ont mis en évidence trois thèmes: (1) L’accommodation de la compétence/incompétence, comme définie cliniquement; (2) La prise de décisions inopportunes; et (3) Le renforcement de l’exclusion des déments dans la prise de décision. Ces thèmes illuminent la façon dont les valeurs culturelles (la compétence), les croyances (l’immuabilité du système) et les pratiques (le réglage des décisions) dans le système de soins à domicile sont finalement déterministes dans la prise de décisions pour les déments et leurs aidants. Afin d’optimiser la santé des déments qui se font soignés à domicile, il faut accorder d’attention supplémentaire aux pratiques collaboratives et inclusives des membres des familles. The hours of unpaid elder care by family members are projected to triple by 2038. Because living with dementia can inhibit decision-making abilities, family members are often besought to assist in this process. In this ethnographic study, relationships within home-based dementia care were critically examined through face-to-face interviews and participant observations with clients, family caregivers, and home care providers (n = 51). The findings revealed how the formalized home care system contextually imposes decisions, and revealed three themes: (1) accommodating clinically defined competence/incompetence, (2) making untimely decisions, and (3) reinforcing exclusion in decision making. These themes shed light on how cultural values (competency), beliefs (immutability of the system), and practices (timing of decisions) of the home care system are ultimately deterministic in decision making for persons with dementia and caregivers. Additional attention to the collaborative and inclusive practices of all family members in dementia home care is imperative in order to optimize health.

Dementia Home Care Resources: How Are We Managing?

With the number of people living with dementia expected to more than double within the next 25 years, the demand for dementia home care services will increase. In this critical ethnographic study, we drew upon interview and participant data with persons with dementia, family caregivers, in-home providers, and case managers in nine dementia care networks to examine the management of dementia home care resources. Three interrelated, dialectical themes were identified: (1) finite formal care-inexhaustible familial care, (2) accessible resources rhetoric-Iinaccessible resources reality, and (3) diminishing care resources-increasing care needs. The development of policies and practices that provide available, accessible, and appropriate resources, ensuring equitable, not necessarily equal, distribution of dementia care resources is required if we are to meet the goal of aging in place now and in the future.

Back- and fore-grounding ontology: exploring the linkages between critical realism, pragmatism, and methodologies in health & rehabilitation sciences

Back- and fore-grounding ontology: exploring the linkages between critical realism, pragmatism, and methodologies in health & rehabilitation sciences As two doctoral candidates in a health and rehabilitation sciences program, we describe in this paper our respective paradigmatic locations along a quite nonlinear ontological-epistemological-axiological-methodological chain. In a turn-taking fashion, we unpack the tenets of critical realism and pragmatism, and then trace the linkages from these paradigmatic locations through to the methodological choices that address a community-based research problem. Beyond serving as an answer to calls for academics in training to demonstrate philosophical-theoretical-methodological integrity and coherence in their scholarship, this paper represents critical realism and its fore-grounding of a deeply stratified ontology in reflexive relation to pragmatism and its back-grounding of ontology. We conclude by considering the merits and challenges of conducting research from within singular versus proliferate paradigmatic perspectives.

Creating a Knowledge Translation Trainee Collaborative: From Conceptualization to Lessons Learned in the First Year

Trainees (e.g., graduate students, residents, fellows) are increasingly identifying knowledge translation as their research discipline. In Canada, a group of trainees have created a trainee-initiated and trainee-led national collaborative to provide a vehicle for trainees to examine the diversity of knowledge translation research and practice, and to link trainees from diverse geographical areas and disciplines. The aim of this paper is to describe our experience and lessons learned in creating the Knowledge Translation Trainee Collaborative. In this meeting report, we outline the process, challenges, and opportunities in planning and experiencing the collaboratives inaugural meeting as participant organizers, and present outcomes and learnings to date.

Qualitative Inquiry and the Debate Between Hermeneutics and Critical Theory

Two issues have been central to ongoing disputes about judgments of quality in qualitative inquiry: (a) the ways in which paradigmatic orientations are understood to guide procedural decisions and (b) the meaning and intelligibility of paradigmatic incommensurability. In this article, we address these two key issues through an exploration of the debates between hermeneutics and critical social theory, including the exchanges between Hans-Georg Gadamer and Jurgen Habermas, and between Richard Rorty and Thomas McCarthy. We suggest that the key epistemological issue addressed in these debates is the nature of interpretation, separating the two philosophical camps based on beliefs about whether foundational knowledge is possible to achieve. We conclude the article by discussing the implications of these different positions for beliefs about quality in qualitative inquiry, and comment on the role of judgment in assessments of the value and quality of different approaches to qualitative research.

Creating an Ethnodrama to Catalyze Dialogue in Home-Based Dementia Care

This article describes the development of a theater script derived from a critical ethnographic study that followed people living with dementia—and their family and professional caregivers—over an 18-month period. Analysis of the ethnographic data yielded four themes that characterized home-based dementia care relationships: managing care resources, making care decisions, evaluating care practices, and reifying care norms. The research team expanded to include a colleague with playwright experience, who used these themes to write a script. A theater director was included to cast and direct the play, and finally, a videography company filmed the actors on a realistic set. To contribute to the qualitative health research and the research-based theater knowledge translation literatures, this article describes and explains the creative decisions taken as part of our effort to disseminate research focused on home-based dementia care in a way that catalyzes and fosters critical (actionable) dialogue.