Pia Kontos

Pia Kontos
KITE Research Institute

PhD

About

168
Publications
27,213
Reads
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5,493
Citations
Introduction
Central to my research is the transformation of the culture of long-term care and rehabilitation so it is more humanistic and quality enhancing. I draw on the arts for their emotive and expressive nature (e.g. music, dance, improvisational play) to enrich the lives of those with dementia. I also draw on research-based drama and film as novel approaches to educational initiatives to effect personal and organizational change in long-term care, neurorehabilitation, and renal rehabilitation settings
Additional affiliations
July 2013 - present
University of Toronto
Position
  • Professor (Associate)
July 2007 - July 2013
University of Toronto
Position
  • Professor (Assistant)
October 2003 - September 2007
Toronto Rehabilitation Institute
Position
  • PostDoc Position
Education
September 1998 - September 2003
University of Toronto
Field of study
  • Public Health Sciences
September 1993 - June 1995
York University
Field of study
  • Medical Anthropology
September 1988 - June 1992
McGill University
Field of study
  • Medial Anthropology

Publications

Publications (168)
Article
With the biomedicalization of death in Canada, and the stigma associated with both dementia and death, people living with dementia (PLwD) in Canada suffer painful and undignified end-of-life (EOL) experiences. There is growing evidence that relational approaches, which value relationships as complex and dynamic connections including broader social,...
Article
Dance has been shown to support empowerment, sociability, and creative self-expression; however, it is rarely adopted with the explicit intention to support these aspects of engagement in the context of dementia care. Instead, dance is primarily adopted as a form of therapy to improve cognitive and physical health outcomes. This is far too narrow g...
Article
Little is known about what educational resources are available to practitioners in Canada for supporting the safe and healthy sexual expressions of persons living with dementia in long-term care (LTC). To address this gap, we conducted a critical review of publicly available online resources in Canada. Our objectives were to identify existing resou...
Article
Full-text available
Background and Objectives Information communication technologies (ICTs) can enhance older adults’ health and wellbeing. Most research on the use of voice-activated ICTs by older adults has focused on the experiences of individuals living in the community, excluding those who live in long-term care homes. Given evidence of the potential benefits of...
Conference Paper
Full-text available
Background Health service organizations have increasingly adopted mission, vision, and value (MVV) statements, vital for communicating strategic plans and demonstrating organizational goals and values for patient and family engagement (PE). These statements, particularly those promoting patient and family engagement (PE), can significantly influenc...
Article
Full-text available
Context Interprofessional collaboration is recommended in caring for frail older adults in primary care, yet little is known about how interprofessional teams approach end-of-life (EOL) conversations with these patients. Objective To understand the factors shaping nurses’ and allied health clinicians’ involvement, or lack of involvement in EOL con...
Article
Full-text available
The person-centered care movement has influenced hospitals to make patient and family engagement (PE) an explicit commitment in their strategic plans. This is often reflected in mission, vision, and value (MVV) statements, which are organizational artifacts intended to influence the attitudes, beliefs, and actions of hospital teams and employees be...
Preprint
BACKGROUND The utilization of technology to provide entertainment and leisure experiences for individuals with cognitive impairments is increasingly widespread. OBJECTIVE We conducted a rapid scoping review of published peer-reviewed literature to answer the following research question: What recreation and leisure programs or activities are being...
Article
Full-text available
Background Recreational and leisure activities significantly contribute to the well-being of older adults, positively impacting physical, cognitive, and mental health. However, limited mobility and cognitive decline often impede access to these activities, particularly for individuals living with dementia. With the increasing availability of digita...
Article
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Background There is growing public policy and research interest in the development and use of various technologies for managing violence in healthcare settings to protect the health and well-being of patients and workers. However, little research exists on the impact of technologies on violence prevention, and in particular in the context of rehabi...
Article
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Background Healthcare providers caring for people living with dementia may experience moral distress when faced with an ethically challenging situation, such as an inability to provide care that is consistent with their values. The COVID‐19 pandemic both created new and exacerbated pre‐existing factors which contributed to the experience of moral d...
Article
Full-text available
Background In prior research, we identified and prioritized ten measures to assess research performance that comply with the San Francisco Declaration on Research Assessment, a principle adopted worldwide that discourages metrics-based assessment. Given the shift away from assessment based on Journal Impact Factor, we explored potential barriers to...
Article
Full-text available
Objective The San Francisco Declaration on Research Assessment (DORA) advocates for assessing biomedical research quality and impact, yet academic organizations continue to employ traditional measures such as Journal Impact Factor. We aimed to identify and prioritize measures for assessing research quality and impact. Methods We conducted a review...
Article
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...
Article
Full-text available
Background Many people living with dementia eventually require care services and spend the remainder of their lives in long-term care (LTC) homes. Yet, many residents with dementia do not receive coordinated, quality palliative care. The stigma associated with dementia leads to an assumption that people living in the advanced stages of dementia are...
Article
Full-text available
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 (hereafter referred to as ‘care homes’) that could potentially contr...
Article
There is growing emphasis for primary care clinicians to initiate and engage in end-of-life (EOL) conversations with medically frail older adults. However, EOL conversations happen most often when death is imminent or are avoided altogether. The objective of this study was to understand the socio-political forces shaping EOL conversations between c...
Poster
Full-text available
Healthcare providers caring for people living with dementia may experience moral distress when faced with an ethically challenging situation, such as an inability to provide care that is consistent with their values. The COVID-19 pandemic both created new and exacerbated pre-existing factors which contributed to the experience of moral distress amo...
Preprint
Objective The San Francisco Declaration on Research Assessment (DORA) advocates for assessing biomedical research quality and impact, yet academic organizations continue to employ traditional measures such as Journal Impact Factor. We aimed to identify and prioritize measures for assessing research quality and impact. Methods We conducted a review...
Article
Full-text available
Background People working in long-term care homes (LTCH) face difficult decisions balancing the risk of infection spread with the hardship imposed on residents by infection control and prevention (ICP) measures. The Dementia Isolation Toolkit (DIT) was developed to address the gap in ethical guidance on how to safely and effectively isolate people...
Article
Full-text available
Background and Objectives Older adult social inclusion involves meaningful participation that is increasingly mediated by information communication technology (ICT) and in rural areas requires understanding of older adults’ experiences in the context of the digital divide. This paper examines how the multi-modal streaming (live, pre-recorded, blend...
Article
Despite rising rates of sexually transmitted infections (STIs) and inequitable access to education and services, few studies have addressed the unique sex education needs of newcomer youth in Canada and other increasingly demographically diverse Western countries. This study involved the design, implementation and evaluation of a novel and innovati...
Article
Full-text available
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 discrimina...
Article
Purpose: We aimed to synthesize the literature that considered frailty in the evaluation of rehabilitation interventions for adults (aged ≥ 18) by answering: (1) how is frailty defined in rehabilitation intervention research?; (2) how is frailty operationalized in rehabilitation intervention research?; (3) what are the characteristics of rehabilita...
Article
Full-text available
Background: Long-term care (LTC) residents have been disproportionately impacted by the COVID-19 pandemic, both from the virus itself and the restrictions in effect for infection prevention and control. Many barriers exist in LTC to prevent the effective isolation of suspect or confirmed COVID-19 cases. Furthermore, these measures have a severe im...
Article
Full-text available
Traumatic brain injury (TBI) and mental health and/or substance use challenges (MHSU) are commonly co-occurring and prevalent in individuals experiencing homelessness; however, evidence suggests that systems of care are siloed and organized around clinical diagnoses. Research is needed to understand how housing and housing supports are provided to...
Article
Objective: To explore what is known about end-of-life (EOL) conversations with frail older adults across all settings including primary care in Canada, and to understand the barriers to, and recommendations for, EOL conversations. Data sources: Comprehensive searches were conducted in CINAHL (EBSCO), Embase (Ovid), MEDLINE (Ovid), AgeLine (EBSCO...
Article
Full-text available
Objectives People working in long-term care homes (LTCH) face ethical dilemmas about how to minimize the risk of spread of COVID-19, while also minimizing psychological hardship and other harms of infection control measures on residents. The Dementia Isolation Toolkit (www.dementiaisolationtoolkit.com; DIT) was developed to address the gap in ethic...
Article
Full-text available
Background Children and youth with cancer may find it challenging to integrate illness into their pre-existing identity—a phenomenon known as illness identity. In this critical narrative review, we explored illness identity among children and youth with cancer. Methods Three academic databases were searched. Twenty-two articles were included in th...
Article
Full-text available
Aim To present findings about experiences of relational caring at an arts-based academy for persons living with dementia. Background There 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 grounde...
Article
Full-text available
Purpose The present study aimed to evaluate the impact of a filmed research-based drama—Fit for Dialysis—and an exercise program on patients’ physical activity and fitness outcomes. Methods Nineteen (10 at the intervention site, 9 at the control site) older patients with a medical diagnosis of hemodialysis-dependent end-stage renal disease were re...
Article
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Limited uptake and use of developed technologies by older adults have prompted interest in participatory design and related approaches in the gerotechnology field. Despite this, recent systematic reviews suggest that researchers continue to passively engage older adults in research projects, often only in providing advice or feedback in the early o...
Article
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 home...
Chapter
As populations and life expectancies increase, interventions to enhance health, well-being, and quality of life become more intricate and more complex. Often, new health interventions and innovations designed to counter progressive age-related challenges never achieve a real-world impact because the product never makes it into real-world settings,...
Chapter
Transdisciplinary working (TDW) is a new model of knowledge production that has emerged in response to a changing research environment in the late twentieth century. In particular, researchers are increasingly required to be accountable and responsive to social priorities and needs, and there is greater pressure to bridge their research with real l...
Chapter
A transdisciplinary research approach is designed to address real-world problems, which are often so complex, multifaceted, and context-oriented that understanding and resolving them requires integrating knowledge from different disciplines and sectors. This chapter provides a brief overview of four transdisciplinary-approach-based strategies that...
Chapter
Increasingly, researchers are working in teams with academics from other disciplines alongside stakeholders and partners (e.g., consumers, patients, caregivers, industry and financers, policy makers) from different sectors. This is especially true in large-scale and complex projects where the focus is on developing real-world solutions. For example...
Article
Full-text available
There have been important advances in research on creativity that have provided a more inclusive view of everyday and ordinary creativity, including that of persons living with dementia. However, these developments are limited by a lack of engagement with scholarship on embodiment, relationality, and citizenship. We address these limitations by dra...
Article
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Background: Recent studies have started disentangling components of disturbed sleep as part of the post-concussive syndrome, but little is known about the workers with an injury' perspectives on post-injury sleep changes or what causes these changes. Objectives: To determine the effects of work-related concussion/mild traumatic brain injury (wr-...
Article
The common practice of delaying and/or avoiding end-of-life conversations with medically frail older adults is an important clinical issue. Most research investigating this practice focuses on clinician training and developing conversation skills. Little is known about the socio-political factors shaping the phenomenon of end-of-life conversations...
Article
Full-text available
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...
Article
Full-text available
Background and objectives: Dance is increasingly being implemented in residential long-term care to improve health and function. However, little research has explored the potential of dance programs to support social inclusion by supporting embodied self-expression, creativity, and social engagement of persons living with dementia and their famili...
Article
Full-text available
Older people, especially those living with dementia, experience significant barriers to meaningful participation in their communities. Focusing on the expansion of an arts-based program to address social inclusion for older people via information communication technology (ICT), this paper identifies the challenges and opportunities of the digital d...
Article
Background: This article describes two dehumanising patterns associated with modern culture and their consequences of stigma and suffering for persons living with dementia: the increasing division, judgment and exclusion of persons based on difference, disability, and undesirability; and the increasing attention to management and control, and their...
Article
We present the findings from a one-day, multidisciplinary meeting to gather feedback for an integrated knowledge translation research project addressing the integration of health services and supports for individuals with traumatic brain injury, mental health, and/or addictions; especially those who experience homelessness/vulnerably housed, inters...
Article
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 tech...
Article
Full-text available
Increasing awareness of errors and harms in institutional care settings, combined with rapid advancements in artificial intelligence, have resulted in a widespread push for implementing monitoring technologies in institutional settings. There has been limited critical reflection in gerontology regarding the ethical, social, and policy implications...
Chapter
Full-text available
A growing body of research suggests that the arts (e.g. music, dance, painting) can improve the lives of people living with dementia. Much of this research has focused on measuring the impact of arts-based programs on “behaviour”, cognition, and emotional states. Given the positive health outcomes that have been demonstrated, the instrumental use o...
Article
Persons living with dementia and their carers experience stigma. Stigma intensifies social exclusion and threatens health and well-being. Decreasing stigma associated with dementia is a public health priority across national and international settings and is a key component of National Dementia Strategies. Research-based drama is an effective publi...
Article
Despite that sexual harassment of care staff negatively affects mental health and occupational outcomes, limited research has explored this in the context of residential long-term care homes. This ethnographic study explored how female care staff (e.g. providers, supervisors) understood and responded to sexual harassment from residents within the r...
Article
As artist and social researchers working in health research, we work ‘against the grain’ in marginalised spaces to resist the marketisation of knowledge and related neoliberal practices. Our cross-disciplinary alliance, between theatre / performance studies and critical health science, is premised on engaging the humanities, arts, and social scienc...
Article
RÉSUMÉ La promotion des droits sexuels dans les établissements de soins de longue durée est complexe sur le plan éthique, étant donné que ce milieu est à la fois une résidence et un lieu de travail. Bien que les données empiriques démontrent que le bien-être des soignants professionnels et des résidents sont inextricablement liés, les politiques pu...
Article
Background: Although work-related injuries are on the decline, rates of work-related traumatic brain injury (wrTBI) continue to rise. As even mild wrTBI can result in cognitive, behavioural, and functional impairments that can last for months and even years, injury prevention is a primary research focus. Administrative claims data have provided va...
Article
Resident-to-resident aggression is quite prevalent in long-term care settings. Within popular and empirical accounts, this form of aggression is most commonly attributed to the actions of an aberrant individual living with dementia characterized as the “violent resident.” It is often a medical diagnosis of dementia that is highlighted as the ultima...
Article
Full-text available
Introduction Although a growing number of frail adults can benefit from rehabilitation services, few are included in rehabilitation services, and reasons for their exclusion are not well understood. To inform research directions in rehabilitation for all adults (aged 18 years and older), we will conduct a scoping review to describe (1) the characte...
Article
Although, exercise can improve the functional outcomes and quality of life of older patients with end-stage renal disease undergoing hemodialysis, it has yet to be promoted as part of routine care. Health care providers and informal carers rarely provide encouragement for patients to exercise, and the majority of older patients remain largely inact...
Article
Although unwanted sexual attention has been linked with care providers’ negative health and occupational outcomes, limited research has explored this in the context of long-term care homes. The purpose of this ethnographic study was to explore how care providers in one home in Ontario, Canada understood and responded to unwanted sexual attention fr...
Article
Full-text available
Introduction This study examines the potential of dance to improve social inclusion for people living with dementia and carers. Research suggests that arts-based programmes can improve the health of people living with dementia and carers; however, little is known about how these programmes might address barriers to social inclusion. Addressing barr...
Article
Purpose: Transdisciplinary research has the potential to enhance the real-world impact of the field of aging and technology. This is a context-driven and problem-focused approach to knowledge production that involves collaboration across scientific disciplines and academic and nonacademic sectors. To sustain broader implementation of this approach,...
Article
Dance, as aesthetic self-expression, is a unique arts-based program that combines the physical benefits of exercise with psychosocial therapeutic benefits. While dance has also been shown to support empowerment, meaningful self-expression, and pleasurable experience, it is rarely adopted to support these aspects of engagement in the context of deme...
Article
Full-text available
Background: 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...
Chapter
Despite the critical knowledge base on dance from phenomenological analyses and somatic studies, dance scholarship and practice in the dementia field largely represents a movement towards cognitive science with an emphasis on embodied cognition and psychotherapeutic use of dance. This chapter argues that understanding and fully supporting dance, no...
Chapter
Introduction This chapter offers a critical understanding of the use of dance as an arts-based approach whose creative-expressive power draws on the body's capacity for innovative action. Most importantly, dance, as a practice and field of study, embraces non-verbal communication, intersubjectivity, affect and embodied or somatic expression (Green,...
Article
This book is a timely collection of interdisciplinary and critical chapters about the fields of ageing studies and the sociology of everyday life as broadly conceived to explore the meaningful connections between subjective lives and social worlds in later life. The scope of the writing expands beyond traditional approaches in these fields to engag...
Article
With the biomedicalisation and the pharmaceuticalisation of dementia, music programs, as with other arts- and leisure-based programs, have primarily been implemented as non-pharmacological means to generate social and behavioural changes. We argue that understanding and fully supporting the musicality of persons living with dementia requires engage...
Chapter
Full-text available
Institutional care for seniors offers a cultural repository for fears and hopes about an aging population. Although enormous changes have occurred in how institutional care is structured, the legacies of the poorhouse still persist, creating panicked views of the nursing home as a dreaded fate. The paradoxical nature of a space meant to be both hos...
Article
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 way...
Article
Full-text available
This study aimed to understand how adult children sustain caring for persons with dementia (PwDs) within their family and formal care contexts in Canada. Half-day focus groups were conducted with adult daughters and adult sons in Toronto, Canada. Using constructivist grounded theory, we examined both substantive concepts and group dynamics. Sustain...
Article
Full-text available
Background Work-related head injury is a critical public health issue due to its rising prevalence; the association with profound disruption of workers’ lives; and significant economic burdens in terms of medical costs and lost wages. Efforts to understand and prevent these types of injuries have largely been dominated by epidemiological research a...
Article
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/trainee...
Article
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/trainee...
Article
Influenced by biomedical/behavioural models, the arts within dementia care are valued primarily as therapy; arts-based interventions are provided as non-pharmacological means to improve functioning of “patients” and treat misunderstood “behaviours”. Informed by theorizing within liberation arts and critical theory, this presentation aims to liberat...
Article
In the field of dementia, ethical issues have primarily been considered from a biomedical perspective, with a focus on norms for medical treatment and participation in medical research trials. The primacy of the biomedical approach to ethics in dementia has eclipsed a broader understanding of the cultural, political and philosophical assumptions th...
Article
Full-text available
The citizenship perspective in dementia has redressed some of the gaps inherent in personhood- and relationship-centred approaches to dementia care by contextualizing individuals in terms of their relationships with the state and its institutions. However, this perspective has yet to be influenced by the emerging theoretical subfield of embodiment,...
Article
Background: Maintaining and improving quality of life, safety, security, and independence for the growing older adult (OA) population requires innovative approaches and transdisciplinary collaboration. The development of novel technologies that address the needs and preferences of OAs can benefit from the active engagement of potential target users...
Article
There is a growing literature that argues for the value of dance as an embodied practice for persons with dementia, as it draws significantly on the body’s potentiality for innovation and creative action and significantly supports non-verbal communication and affect. Despite the critical knowledge base on dance from phenomenological analyses and so...
Article
Despite the important contributions the citizenship movement has made to improving the status and treatment of persons with dementia, it has not accounted for their sexual rights. Drawing on a new model of relational citizenship, we advance an ethic of embodied relational sexuality that importantly broadens the exclusive goal of biomedical ethics f...
Article
Full-text available
Background: Engaging older adults (OAs) in technology research, design and development is considered to be key in creating products that better fit their needs and preferences. However, engaging OAs, especially persons with mobility, physical or cognitive limitations, often requires employing individualized approaches and flexible ways of participa...
Article
Full-text available
Adopting a transdisciplinary approach to the development of technologies to support older adults and their care partners is crucial to bridging research with policy and practice. Despite increased popularity of this approach, research evaluating transdisciplinary processes and outcomes remains limited due to an absence of evaluative tools. This pre...
Article
Full-text available
A globally aging population necessitates innovative approaches for the development of technologies to ensure older adults age well. Whilst scientists across disciplines address a wide-range of ‘aging complexities’ through research and innovation, without appropriate integration of commercialization mechanisms, such outputs may result in little or n...
Chapter
We draw on findings from a mixed-method study of specialised red-nosed elderclowns in a long-term care facility to advance a model of ‘relational citizenship’ for individuals with dementia. Relational citizenship foregrounds the reciprocal nature of engagement and the centrality of capacities, senses, and experiences of bodies to the exercise of hu...