Background and Objectives Relational caring has the capacity to reduce stigma associated with dem... more Background and Objectives Relational caring has the capacity to reduce stigma associated with dementia by shifting the focus from dysfunction and behavior management, to attending to the interdependencies and reciprocities that underpin caring relationships, and making explicit the centrality of relationships to quality care, growth, and quality of life. Education, particularly arts-based approaches, has been identified as a key strategy to decrease stigma. Yet rarely are the arts utilized in educational initiatives, and particularly so in community care settings. With an interest in redressing this, our team evaluated the impact of a Canadian filmed research-based drama—Cracked: new light on dementia—about stigma associated with people living with dementia and their families. Research Design and Methods We conducted interviews with family carers of people living with dementia and formal care providers affiliated with community-based dementia care, and also the general public at 3 and 8 months postscreening. Results Our analysis of participants’ perceptions/experiences illustrates the effectiveness of Cracked in reducing stigma by demonstrating changes in the understanding of dementia and changes in practice. Our analysis also includes attention to how the film, as a form of cultural production, deepened engagement and facilitated transformation. Discussion and Implications Our evaluation of Cracked demonstrates that it is an effective strategy for decreasing the stigma associated with dementia by promoting relational caring. It also importantly contributes to the theoretical literature that supports film-based approaches to stigma reduction.
Die Kommodifizierung und Verkorperschaftlichung der Hochschulen, Forschungseinrichtungen und von ... more Die Kommodifizierung und Verkorperschaftlichung der Hochschulen, Forschungseinrichtungen und von Praxis und Politik hat im Bereich qualitativer Gesundheitsforschung sehr viel Aufmerksamkeit erfahren. Besonders kritisch ist, dass das Uberhandnehmen neoliberaler Rationalitat eine kritische qualitative Forschungspraxis zunehmend erschwert. Wir reflektieren dies durch den Ruckgriff auf eigene Erfahrungen im Rahmen groser interdisziplinarer Forschungsteams, indem wir Schlusselereignisse, Interaktionen und Verlaufe sowie deren existenzielle und materielle Konsequenzen interpretieren und produktive Strategien an den Randern der Gesundheitswissenschaften diskutieren. Uns liegt am Herzen, uns fur eine umfassende Widerstandsagenda zu engagieren, die nicht nur das Uberleben, sondern auch die Blute qualitativer Gesundheitsforschung zum Ziel hat.
Eine wachsende Zahl an Gesundheitswissenschaftler/innen unterschiedlicher disziplinarer Herkunft ... more Eine wachsende Zahl an Gesundheitswissenschaftler/innen unterschiedlicher disziplinarer Herkunft experimentiert mit innovativen performativen Ansatzen (z.B. Film, Theater, Tanz), um ein breiteres Publikum umfassend und kritisch in die Forschungsarbeit und ihre Ergebnisse zu involvieren. Doch trotz der enger werdenden Verbindung zwischen Kunst und Forschung folgen viele dieser Arbeiten weiter einer "Asthetik der Objektivitat", die von einem linearen Bezug zwischen Forschung und performativer Umsetzung ausgeht und vernachlassigen die kunstlerische Interpretation , die aus unserer Perspektive fur eine kritische performative Arbeit essenziell ist. Wie es gelingen kann, uber eine solche Asthetik der Objektivitat hinauszukommen, zeigen wir an der Konzeption und Umsetzung des Films "Fit for Dialysis". Hier war es unerlasslich, dass Asthetik, Imagination und Korperlichkeit eine zentrale Rolle im gesamten Arbeitsprozess spielten, um das interaktive, erzieherische und ema...
The rapid emergence of COVID-19 has had far-reaching effects across all sectors of health and soc... more The rapid emergence of COVID-19 has had far-reaching effects across all sectors of health and social care, but none more so than for residential long-term care homes. Mortality rates of older people with dementia in residential long-term care homes have been exponentially higher than the general public. Morbidity rates are also higher in these homes with the effects of government-imposed COVID-19 public health directives (e.g., strict social distancing), which have led most residential long-term care homes to adopt strict ‘no visitor’ and lockdown policies out of concern for their residents’ physical safety. This tragic toll of the COVID-19 pandemic highlights profound stigma-related inequities. Societal assumptions that people living with dementia have no purpose or meaning and perpetuate a deep pernicious fear of, and disregard for, persons with dementia. This has enabled discriminatory practices such as segregation and confinement to residential long-term care settings that are s...
Background and ObjectivesDance is increasingly being implemented in residential long-term care to... more Background and ObjectivesDance is increasingly being implemented in residential long-term care to improve health and function. However, little research has explored the potential of dance to enhance social inclusion by supporting embodied self-expression, creativity, and social engagement of persons living with dementia and their families.Research Design and MethodsThis was a qualitative sequential multiphase study of Sharing Dance Seniors, a dance program that includes a suite of remotely streamed dance sessions that are delivered weekly to participants in long-term care and community settings. Our analysis focused on the participation of 67 persons living with dementia and 15 family carers in residential long-term care homes in Manitoba, Canada. Data included participant observation, video recordings, focus groups, and interviews; all data were analyzed thematically.ResultsWe identified 2 themes: playfulness and sociability. Playfulness refers to the ways that the participants let...
Research-informed theater is often informed by an assumed linear trajectory between research find... more Research-informed theater is often informed by an assumed linear trajectory between research findings and performance, overlooking the multiple embodied perspectives that are implicated in the development of research-informed theater. To challenge this assumption, we explore how artist-researchers draw on their own embodiment and imagination as ways to understand the research findings, how they conceptualize the intended audience, and how those understandings shape the creative process of the research-informed play. Using the case study of the research-informed play Cracked: New Light on Dementia, we focus on three interrelated modes of practice: playful extending, foolish disrupting, and inventive disrupting. We argue that these modes of practice create an aesthetic of relationality, what we define as an aesthetic space within which the embodied interpretive work of artist-researchers is extended into spatial, relational contexts. We discuss implications of this theoretical framewo...
Exercise improves functional outcomes and quality of life of older patients with end-stage renal ... more Exercise improves functional outcomes and quality of life of older patients with end-stage renal disease undergoing hemodialysis. Yet exercise is not promoted as part of routine care. Health care providers and family carers rarely provide encouragement for patients to exercise, and the majority of older patients remain largely inactive. There is thus the need for a shift in the culture of hemodialysis care towards the promotion of exercise for wellness, including expectations of exercise participation by older patients, and encouragement by health care providers and family carers. Film-based educational initiatives hold promise to effect cultures of best practice, but have yet to be utilized in this population. We developed a research-based film, Fit for Dialysis, to promote exercise for wellness in hemodialysis care. Using a qualitative approach, we evaluated the effects that resulted from engagement with this film (e.g. knowledge/attitudes regarding the importance of exercise-base...
This article explores the notion of ‘impact’ in art-based health research (ABHR), and how we migh... more This article explores the notion of ‘impact’ in art-based health research (ABHR), and how we might re-conceptualize it through the kind of work ABHR ‘does’ in generating and disseminating knowledge. We explore ‘impact’ from a critical qualitative perspective, leveraging findings from a study based on interviews with ABHR researchers/artists/trainees. We focus on their reflections related to ‘impact’, and informed by our own experiences of producing/evaluating ABHR in diverse genres. We argue for a conceptualization of impact that moves beyond an exclusive positivist and biomedical concern with whether certain ABHR ‘interventions’ (defined here as processes/products of an ABHR study) work in generalizable ways, to one that focuses on context as well as processes of development, implementation and engagement. How will we know if a particular ABHR project ‘worked’? What kinds of ‘work’ do the products of ABHR do? How might we, or should we, tease out ‘process’ from ‘product’? In explor...
Sexual citizenship and sexual rights scholarship have made important contributions to broadening ... more Sexual citizenship and sexual rights scholarship have made important contributions to broadening citizenship and more fully accommodating rights related to sexuality. However, this scholarship has concentrated primarily on the sexuality and intimacy-related needs of younger people and those who are not cognitively impaired. Consequently, it has inadvertently served to marginalize persons living with dementia who reside in long-term residential care settings. We argue that supporting sexual rights for persons with dementia requires a particular human rights ontology for citizenship-one that recognizes that corporeality is a fundamental source of self-expression, interdependence, and reciprocal engagement. This is an ontology that underpins our model of relational citizenship and that grounds our articulation of an ethic of embodied relational sexuality. In our view, this ethic offers important direction for the development of policy, legislation, and clinical guidelines to support se...
AimTo present findings about experiences of relational caring at an arts-based academy for person... more AimTo present findings about experiences of relational caring at an arts-based academy for persons living with dementia.BackgroundThere is a compelling call and need for connection and relationships in communities living with dementia. This study shares what is possible when a creative arts-based academy for persons living with dementia grounded in relational inquiry and caring focuses on relationships through the medium of the arts.DesignA qualitative phenomenological methodology (informed by van Manen) was used to answer the research question, “What is it like to experience relational caring at an arts-based academy for persons living with dementia?” We address two research objectives: (1) to explore how relationships are experienced when a relational caring philosophy underpins practice, including arts-based engagements; and (2) to understand the meaning of relationships that bring quality to day-to-day living.MethodsTwenty-five participants were recruited from the Academy and in...
Despite the recognized benefits of sexual expression and its importance in the lives of people li... more Despite the recognized benefits of sexual expression and its importance in the lives of people living with dementia, research demonstrates that there are multiple barriers to its positive expression (e.g., expression that is pleasurable and free of coercion, discrimination, and violence) in RLTC homes. These barriers constitute a form of discrimination based on age and ability, and violate the rights of persons living with dementia to dignity, autonomy, and participation in everyday life and society. Drawing on a human rights approach to dementia and sexual expression, we explored the experiences of diverse professionals, family members, and persons living with dementia with explicit attention to the ways in which macro-level dynamics are influencing the support, or lack thereof, for sexual expression at the micro level. Focus groups and in-depth interviews were conducted with 27 participants, and the collected data were analyzed thematically. While all participants acknowledged that intimacy and sexual expression of persons living with dementia should be supported, rarely is such expression supported in practice. Micro-level factors included negative attitudes of professionals toward sexual expression by persons living with dementia, their discomfort with facilitating intimacy and sexual expression in the context of their professional roles, their anxieties regarding potential negative reactions from family members, and concerns about sanctions for failing to prevent abuse. In our analysis, we importantly trace these micro-level factors to macro-level factors. The latter include the cultural stigma associated with dementia, ageism, ableism, and erotophobia, all of which are reproduced in, and reinforced by, professionals’ education, as well as legal and professional standards that exclusively focus on managing and safeguarding residents from abuse. Our analysis demonstrates a complexity that has enormous potential to inform future research that is critically needed for the development of educational initiatives and to promote policy changes in this area.
Background and Objectives Relational caring has the capacity to reduce stigma associated with dem... more Background and Objectives Relational caring has the capacity to reduce stigma associated with dementia by shifting the focus from dysfunction and behavior management, to attending to the interdependencies and reciprocities that underpin caring relationships, and making explicit the centrality of relationships to quality care, growth, and quality of life. Education, particularly arts-based approaches, has been identified as a key strategy to decrease stigma. Yet rarely are the arts utilized in educational initiatives, and particularly so in community care settings. With an interest in redressing this, our team evaluated the impact of a Canadian filmed research-based drama—Cracked: new light on dementia—about stigma associated with people living with dementia and their families. Research Design and Methods We conducted interviews with family carers of people living with dementia and formal care providers affiliated with community-based dementia care, and also the general public at 3 and 8 months postscreening. Results Our analysis of participants’ perceptions/experiences illustrates the effectiveness of Cracked in reducing stigma by demonstrating changes in the understanding of dementia and changes in practice. Our analysis also includes attention to how the film, as a form of cultural production, deepened engagement and facilitated transformation. Discussion and Implications Our evaluation of Cracked demonstrates that it is an effective strategy for decreasing the stigma associated with dementia by promoting relational caring. It also importantly contributes to the theoretical literature that supports film-based approaches to stigma reduction.
Die Kommodifizierung und Verkorperschaftlichung der Hochschulen, Forschungseinrichtungen und von ... more Die Kommodifizierung und Verkorperschaftlichung der Hochschulen, Forschungseinrichtungen und von Praxis und Politik hat im Bereich qualitativer Gesundheitsforschung sehr viel Aufmerksamkeit erfahren. Besonders kritisch ist, dass das Uberhandnehmen neoliberaler Rationalitat eine kritische qualitative Forschungspraxis zunehmend erschwert. Wir reflektieren dies durch den Ruckgriff auf eigene Erfahrungen im Rahmen groser interdisziplinarer Forschungsteams, indem wir Schlusselereignisse, Interaktionen und Verlaufe sowie deren existenzielle und materielle Konsequenzen interpretieren und produktive Strategien an den Randern der Gesundheitswissenschaften diskutieren. Uns liegt am Herzen, uns fur eine umfassende Widerstandsagenda zu engagieren, die nicht nur das Uberleben, sondern auch die Blute qualitativer Gesundheitsforschung zum Ziel hat.
Eine wachsende Zahl an Gesundheitswissenschaftler/innen unterschiedlicher disziplinarer Herkunft ... more Eine wachsende Zahl an Gesundheitswissenschaftler/innen unterschiedlicher disziplinarer Herkunft experimentiert mit innovativen performativen Ansatzen (z.B. Film, Theater, Tanz), um ein breiteres Publikum umfassend und kritisch in die Forschungsarbeit und ihre Ergebnisse zu involvieren. Doch trotz der enger werdenden Verbindung zwischen Kunst und Forschung folgen viele dieser Arbeiten weiter einer "Asthetik der Objektivitat", die von einem linearen Bezug zwischen Forschung und performativer Umsetzung ausgeht und vernachlassigen die kunstlerische Interpretation , die aus unserer Perspektive fur eine kritische performative Arbeit essenziell ist. Wie es gelingen kann, uber eine solche Asthetik der Objektivitat hinauszukommen, zeigen wir an der Konzeption und Umsetzung des Films "Fit for Dialysis". Hier war es unerlasslich, dass Asthetik, Imagination und Korperlichkeit eine zentrale Rolle im gesamten Arbeitsprozess spielten, um das interaktive, erzieherische und ema...
The rapid emergence of COVID-19 has had far-reaching effects across all sectors of health and soc... more The rapid emergence of COVID-19 has had far-reaching effects across all sectors of health and social care, but none more so than for residential long-term care homes. Mortality rates of older people with dementia in residential long-term care homes have been exponentially higher than the general public. Morbidity rates are also higher in these homes with the effects of government-imposed COVID-19 public health directives (e.g., strict social distancing), which have led most residential long-term care homes to adopt strict ‘no visitor’ and lockdown policies out of concern for their residents’ physical safety. This tragic toll of the COVID-19 pandemic highlights profound stigma-related inequities. Societal assumptions that people living with dementia have no purpose or meaning and perpetuate a deep pernicious fear of, and disregard for, persons with dementia. This has enabled discriminatory practices such as segregation and confinement to residential long-term care settings that are s...
Background and ObjectivesDance is increasingly being implemented in residential long-term care to... more Background and ObjectivesDance is increasingly being implemented in residential long-term care to improve health and function. However, little research has explored the potential of dance to enhance social inclusion by supporting embodied self-expression, creativity, and social engagement of persons living with dementia and their families.Research Design and MethodsThis was a qualitative sequential multiphase study of Sharing Dance Seniors, a dance program that includes a suite of remotely streamed dance sessions that are delivered weekly to participants in long-term care and community settings. Our analysis focused on the participation of 67 persons living with dementia and 15 family carers in residential long-term care homes in Manitoba, Canada. Data included participant observation, video recordings, focus groups, and interviews; all data were analyzed thematically.ResultsWe identified 2 themes: playfulness and sociability. Playfulness refers to the ways that the participants let...
Research-informed theater is often informed by an assumed linear trajectory between research find... more Research-informed theater is often informed by an assumed linear trajectory between research findings and performance, overlooking the multiple embodied perspectives that are implicated in the development of research-informed theater. To challenge this assumption, we explore how artist-researchers draw on their own embodiment and imagination as ways to understand the research findings, how they conceptualize the intended audience, and how those understandings shape the creative process of the research-informed play. Using the case study of the research-informed play Cracked: New Light on Dementia, we focus on three interrelated modes of practice: playful extending, foolish disrupting, and inventive disrupting. We argue that these modes of practice create an aesthetic of relationality, what we define as an aesthetic space within which the embodied interpretive work of artist-researchers is extended into spatial, relational contexts. We discuss implications of this theoretical framewo...
Exercise improves functional outcomes and quality of life of older patients with end-stage renal ... more Exercise improves functional outcomes and quality of life of older patients with end-stage renal disease undergoing hemodialysis. Yet exercise is not promoted as part of routine care. Health care providers and family carers rarely provide encouragement for patients to exercise, and the majority of older patients remain largely inactive. There is thus the need for a shift in the culture of hemodialysis care towards the promotion of exercise for wellness, including expectations of exercise participation by older patients, and encouragement by health care providers and family carers. Film-based educational initiatives hold promise to effect cultures of best practice, but have yet to be utilized in this population. We developed a research-based film, Fit for Dialysis, to promote exercise for wellness in hemodialysis care. Using a qualitative approach, we evaluated the effects that resulted from engagement with this film (e.g. knowledge/attitudes regarding the importance of exercise-base...
This article explores the notion of ‘impact’ in art-based health research (ABHR), and how we migh... more This article explores the notion of ‘impact’ in art-based health research (ABHR), and how we might re-conceptualize it through the kind of work ABHR ‘does’ in generating and disseminating knowledge. We explore ‘impact’ from a critical qualitative perspective, leveraging findings from a study based on interviews with ABHR researchers/artists/trainees. We focus on their reflections related to ‘impact’, and informed by our own experiences of producing/evaluating ABHR in diverse genres. We argue for a conceptualization of impact that moves beyond an exclusive positivist and biomedical concern with whether certain ABHR ‘interventions’ (defined here as processes/products of an ABHR study) work in generalizable ways, to one that focuses on context as well as processes of development, implementation and engagement. How will we know if a particular ABHR project ‘worked’? What kinds of ‘work’ do the products of ABHR do? How might we, or should we, tease out ‘process’ from ‘product’? In explor...
Sexual citizenship and sexual rights scholarship have made important contributions to broadening ... more Sexual citizenship and sexual rights scholarship have made important contributions to broadening citizenship and more fully accommodating rights related to sexuality. However, this scholarship has concentrated primarily on the sexuality and intimacy-related needs of younger people and those who are not cognitively impaired. Consequently, it has inadvertently served to marginalize persons living with dementia who reside in long-term residential care settings. We argue that supporting sexual rights for persons with dementia requires a particular human rights ontology for citizenship-one that recognizes that corporeality is a fundamental source of self-expression, interdependence, and reciprocal engagement. This is an ontology that underpins our model of relational citizenship and that grounds our articulation of an ethic of embodied relational sexuality. In our view, this ethic offers important direction for the development of policy, legislation, and clinical guidelines to support se...
AimTo present findings about experiences of relational caring at an arts-based academy for person... more AimTo present findings about experiences of relational caring at an arts-based academy for persons living with dementia.BackgroundThere is a compelling call and need for connection and relationships in communities living with dementia. This study shares what is possible when a creative arts-based academy for persons living with dementia grounded in relational inquiry and caring focuses on relationships through the medium of the arts.DesignA qualitative phenomenological methodology (informed by van Manen) was used to answer the research question, “What is it like to experience relational caring at an arts-based academy for persons living with dementia?” We address two research objectives: (1) to explore how relationships are experienced when a relational caring philosophy underpins practice, including arts-based engagements; and (2) to understand the meaning of relationships that bring quality to day-to-day living.MethodsTwenty-five participants were recruited from the Academy and in...
Despite the recognized benefits of sexual expression and its importance in the lives of people li... more Despite the recognized benefits of sexual expression and its importance in the lives of people living with dementia, research demonstrates that there are multiple barriers to its positive expression (e.g., expression that is pleasurable and free of coercion, discrimination, and violence) in RLTC homes. These barriers constitute a form of discrimination based on age and ability, and violate the rights of persons living with dementia to dignity, autonomy, and participation in everyday life and society. Drawing on a human rights approach to dementia and sexual expression, we explored the experiences of diverse professionals, family members, and persons living with dementia with explicit attention to the ways in which macro-level dynamics are influencing the support, or lack thereof, for sexual expression at the micro level. Focus groups and in-depth interviews were conducted with 27 participants, and the collected data were analyzed thematically. While all participants acknowledged that intimacy and sexual expression of persons living with dementia should be supported, rarely is such expression supported in practice. Micro-level factors included negative attitudes of professionals toward sexual expression by persons living with dementia, their discomfort with facilitating intimacy and sexual expression in the context of their professional roles, their anxieties regarding potential negative reactions from family members, and concerns about sanctions for failing to prevent abuse. In our analysis, we importantly trace these micro-level factors to macro-level factors. The latter include the cultural stigma associated with dementia, ageism, ableism, and erotophobia, all of which are reproduced in, and reinforced by, professionals’ education, as well as legal and professional standards that exclusively focus on managing and safeguarding residents from abuse. Our analysis demonstrates a complexity that has enormous potential to inform future research that is critically needed for the development of educational initiatives and to promote policy changes in this area.
As an interdisciplinary group of health and artist researchers, we are concerned about the ways i... more As an interdisciplinary group of health and artist researchers, we are concerned about the ways in which many persons living with dementia in long-term care homes are invalidated and treated as dysfunctional, thereby promoting social exclusion, depriving them of their dignity, and threatening their quality of life. We are concerned about the ways in which persons with dementia are framed as lost, robbed of mind, doomed, gutted, and the living dead. As part of this, we are conscious of the ways the “tragedy discourse” (Mitchell et al., “Dementia”) is culturally produced through media and artistic representations and the ways it is manifested in care practices and policies in institutional settings, conceptualized as a kind of “social action.”1 This tragedy discourse is found in mass media, academic, and policy documents and in the reductive and dehumanizing nature of dementia care that is characterized by the management of “challenging behaviours” with mechanical and/or pharmacological restraint (Maust et al.; Dupuis et al., “Pathologizing”).
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