Conversation for change: engaging older adults as partners in research on gerotechnology.

There is increasing research and public policy investment in the development of technologies to support healthy aging and age-friendly services in Canada. Yet adoption and use of technologies by older adults is limited and rates of abandonment remain high. In response to this, there is growing interest within the field of gerotechnology in fostering greater participation of older adults in research and design. The nature of participation ranges from passive information gathering to more active involvement in research activities, such as those informed by participatory design or participatory action research (PAR). However, participatory approaches are rare with identified barriers including ageism and ableism. This stigma contributes to the limited involvement of older adults in gerotechnology research and design, which in turn reinforces negative stereotypes, such as lack of ability and interest in technology. While the full involvement of older adults in gerotechnology remains rare, the Older Adults' Active Involvement in Ageing & Technology Research and Development (OA-INVOLVE) project aims to develop models of best practice for engaging older adults in these research projects. In this comment paper, we employ an unconventional, conversational-style format between academic researchers and older adult research contributors to provide new perspectives, understandings, and insights into: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers.

More investments are being made to develop technologies that support healthy aging and age-friendly services in Canada. However, not many older adults use these technologies and those who do tend to stop using them after some time. Gerotechnology is a field of study that combines an interest in gerontology and technology. Within gerotechnology, researchers are learning more about how to encourage older adults to participate in research and the design of new technologies. There are different ways that older adults participate in gerotechnology research, with some approaches being more passive than others. In participatory design and participatory action research projects older adults are encouraged to engage more actively as co-researchers. However, researchers have found that there are some limitations to engaging older adults actively in research, including ageism and ableism, meaning that older adults are perceived to be capable of contributing based on their age and cognitive or physical abilities. These stereotypes have limited how often and how much older adults actually contribute to technology research and design. The Older Adults' Active Involvement in Aging & Technology Research and Development (OA-INVOLVE) project aims to address these gaps. In this comment paper, we present a conversation between academic and older adult researchers who have contributed to OA-INVOLVE. The goal of this conversation is to explore together: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers.

Projecting a Critique of Stigma Associated With Dementia on Screen: The Impact of a Canadian Film on the Importance of Relational Caring in the Community.

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.

Understanding the connection between hospital goals and patient and family engagement: A scoping review.

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 because of their saliency in organizational documents and communications. Previous research has found that organizational goals for PE, like those articulated in MVV statements, can lead to effective and meaningful PE. However, a deeper understanding of how and under which circumstances MVV statements encourage and promote PE practices is needed. A scoping review was conducted to understand the connection between hospital PE goals (such as MVV statements) and PE processes and practices. The research question was: what is known about how hospital MVV statements relate to PE processes and activities? Following Arksey and O'Malley's scoping review approach, 27 articles were identified as relevant to the research question. These articles revealed five strategies that help realize hospital PE goals: communicating organizational goals; aligning documents that convey organizational goals; aligning organizational processes to support PE; providing employees with resources and support; and motivating and empowering employees to integrate PE into their work. We discuss the implications of misalignment between hospital goals and practices, which reduce team and individual motivation toward hospital PE goals.

"I don't see the whole picture of their health": a critical ethnography of constraints to interprofessional collaboration in end-of-life conversations in primary care.

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 conversations in the primary care of frail older adults. METHODS/SETTING: A critical ethnography of a large interprofessional urban Family Health Team in Ontario, Canada. Data production included observations of clinicians in their day-to-day activities excluding direct patient care; one-to-one semi-structured interviews with clinicians; and document review. Analysis involved coding data using an interprofessional collaboration framework as well as an analysis of the normative logics influencing practice. PARTICIPANTS: Interprofessional clinicians (n = 20) who cared for mildly to severely frail patients (Clinical Frailty Scale) at the Family Health Team. RESULTS: Findings suggest primary care nurses and allied health clinicians have the knowledge, skills, and inclination to engage frail older adults in EOL conversations. However, the culture of the clinic prioritizes biomedical care, and normalizes nurses and allied health clinicians providing episodic task-based care, which limits the possibility for these clinicians' engagement in EOL conversations. The barriers to nurses' and allied health clinicians' involvement in EOL conversations are rooted in neoliberal-biomedical ideologies that shapes the way primary care is governed and practiced. CONCLUSIONS: Our findings help to explain why taking an individual-level approach to addressing the challenge of delayed or avoided EOL conversations, is unlikely to result in practice change. Instead, primary care teams can work to critique and redevelop quality indicators and funding models in ways that promote meaningful interprofessional practice that recognize the expertise of nursing and allied health clinicians in providing high quality primary care to frail older patients, including EOL conversations.

Rehabilitation professionals' perspectives and experiences with the use of technologies for violence prevention: a qualitative study.

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 rehabilitation settings. Our study addresses this gap by exploring the perceptions and experiences of rehabilitation professionals regarding how technologies are used (or not) for violence prevention, and their perceptions regarding their efficacy and impact. METHODS: This was a descriptive qualitative study with 10 diverse professionals (e.g., physical therapy, occupational therapy, recreation therapy, nursing) who worked across inpatient and outpatient settings in one rehabilitation hospital. Data collection consisted of semi-structured interviews with all participants. A conventional approach to content analysis was used to identify key themes. RESULTS: We found that participants used three types of technologies for violence prevention: an electronic patient flagging system, fixed and portable emergency alarms, and cameras. All of these were perceived by participants as being largely ineffective for violence prevention due to poor design features, malfunction, limited resources, and incompatibility with the culture of care. Our analysis further suggests that professionals' perception that these technologies would not prevent violence may be linked to their focus on individual patients, with a corresponding lack of attention to structural factors, including the culture of care and the organizational and physical environment. CONCLUSIONS: Our findings suggest an urgent need for greater consideration of structural factors in efforts to develop effective interventions for violence prevention in rehabilitation settings, including the design and implementation of new technologies.

Exploring the merits of research performance measures that comply with the San Francisco Declaration on Research Assessment and strategies to overcome barriers of adoption: qualitative interviews with administrators and researchers.

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 implementing and adopting the prioritized measures. METHODS: We identified administrators and researchers across six research institutes, conducted telephone interviews with consenting participants, and used qualitative description and inductive content analysis to derive themes. RESULTS: We interviewed 18 participants: 6 administrators (research institute business managers and directors) and 12 researchers (7 on appointment committees) who varied by career stage (2 early, 5 mid, 5 late). Participants appreciated that the measures were similar to those currently in use, comprehensive, relevant across disciplines, and generated using a rigorous process. They also said the reporting template was easy to understand and use. In contrast, a few administrators thought the measures were not relevant across disciplines. A few participants said it would be time-consuming and difficult to prepare narratives when reporting the measures, and several thought that it would be difficult to objectively evaluate researchers from a different discipline without considerable effort to read their work. Strategies viewed as necessary to overcome barriers and support implementation of the measures included high-level endorsement of the measures, an official launch accompanied by a multi-pronged communication strategy, training for both researchers and evaluators, administrative support or automated reporting for researchers, guidance for evaluators, and sharing of approaches across research institutes. CONCLUSIONS: While participants identified many strengths of the measures, they also identified a few limitations and offered corresponding strategies to address the barriers that we will apply at our organization. Ongoing work is needed to develop a framework to help evaluators translate the measures into an overall assessment. Given little prior research that identified research assessment measures and strategies to support adoption of those measures, this research may be of interest to other organizations that assess the quality and impact of research.

DORA-compliant measures of research quality and impact to assess the performance of researchers in biomedical institutions: Review of published research, international best practice and Delphi survey.

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 of published and grey literature to identify measures of research quality and impact, which we included in an online survey. We assembled a panel of researchers and research leaders, and conducted a two-round Delphi survey to prioritize measures rated as high (rated 6 or 7 by ≥ 80% of respondents) or moderate (rated 6 or 7 by ≥ 50% of respondents) importance. RESULTS: We identified 50 measures organized in 8 domains: relevance of the research program, challenges to research program, or productivity, team/open science, funding, innovations, publications, other dissemination, and impact. Rating of measures by 44 panelists (60%) in Round One and 24 (55%) in Round Two of a Delphi survey resulted in consensus on the high importance of 5 measures: research advances existing knowledge, research plan is innovative, an independent body of research (or fundamental role) supported by peer-reviewed research funding, research outputs relevant to discipline, and quality of the content of publications. Five measures achieved consensus on moderate importance: challenges to research productivity, potential to improve health or healthcare, team science, collaboration, and recognition by professional societies or academic bodies. There was high congruence between researchers and research leaders across disciplines. CONCLUSIONS: Our work contributes to the field by identifying 10 DORA-compliant measures of research quality and impact, a more comprehensive and explicit set of measures than prior efforts. Research is needed to identify strategies to overcome barriers of use of DORA-compliant measures, and to "de-implement" traditional measures that do not uphold DORA principles yet are still in use.

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 (hereafter referred to as 'care homes') 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 care home staff. Survey participants (n = 227) working in care homes across Ontario, Canada were recruited through provincial care home organizations. Using a Bayesian approach, we examined the association between moral distress and staff demographics and roles, and characteristics of the long-term care home. We performed a qualitative analysis of the survey's free-text responses. More than 80% of care home 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 care homes, with preliminary evidence suggesting that individual and systemic factors may intensify the negative effect.

Conceptualization of frailty in rehabilitation interventions with adults: a scoping review.

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 rehabilitation interventions for frail adults and what frailty related outcomes are assessed?Materials and methods: A scoping review was conducted. Data were analyzed using descriptive statistics and qualitative content analysis.Results: 53 articles met the inclusion criteria. Most studies were conducted in Europe and involved randomized control trials. The included studies reported on rehabilitation interventions that only included individuals aged 50 or older. Thirteen studies used Fried's definition of frailty, but most (n = 27) did not use any definition. Many studies did not differentiate between the conceptualization (e.g., definition) and operationalization (e.g., use of inclusion/exclusion criteria, outcome measures) of frailty. Most interventions focused on exercise. Instrumental activities of daily living reported most frequently as outcomes (n = 11).Conclusions: There is an absence of consistent definitions of frailty in rehabilitation interventions and current definitions tend to focus on physical functioning. The authors suggest rehabilitation researchers consider an expanded definition of frailty informed by the International Classification of Functioning, Disability and Health framework.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals should use an expanded definition of frailty, informed by the International Classification of Functioning, Disability and Health framework, should include physical, mental, personal, environmental, and social factors to decrease, delay, or prevent frailty in adults.Rehabilitation professionals should consider a broader operationalization of frailty that is not dependent on age and physical functioning.Rehabilitation professionals that consider a broader conceptualization of frailty should tailor interventions to the specific needs of frail adults.

Dance Wherever You Are: The Evolution of Multimodal Delivery for Social Inclusion of Rural Older Adults.

BACKGROUND AND OBJECTIVES: Older adult social inclusion involves meaningful participation that is increasingly mediated by information communication technology and in rural areas requires an understanding of older adults' experiences in the context of the digital divide. This article examines how the multimodal streaming (live, prerecorded, blended in-person) of the Sharing Dance Older Adults program developed by Canada's National Ballet School and Baycrest influenced social inclusion processes and outcomes in rural settings. RESEARCH DESIGN AND METHODS: Data were collected from on-site observations of dance sessions, research team reflections, focus groups, and interviews with older adult participants and their carers in pilot studies in the Peterborough region of Ontario and the Westman region of Manitoba, Canada (2017-2019). There were 289 participants including older adults, people living with dementia, family carers, long-term care staff, community facilitators, and volunteers. Analytic themes were framed in the context of rural older adult social exclusion. RESULTS: Remote delivery addressed barriers of physical distance by providing access to the arts-based program and enhancing opportunities for participation. Constraints were introduced by the use of technology in rural areas and mitigated by in-person facilitators and different streaming options. Meaningful engagement in dynamic interactions in the dance was achieved by involving local staff and volunteers in facilitation of and feedback on the program and its delivery. Different streaming technologies influenced social inclusion in different ways: live-stream enhanced connectedness, but constrained technical challenges; prerecorded was reliable, but less social; blended delivery provided options, but personalization was unsustainable. DISCUSSION AND IMPLICATIONS: Understanding different participants' experiences of different technologies will contribute to more effective remote delivery of arts-based programs with options to use technology in various contexts depending on individual and organizational capacities.

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

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 living with dementia while supporting their personhood. In this observational study, we report the results of a survey of LTCH staff on barriers and facilitators regarding isolating residents, and the impact of the DIT on staff moral distress. METHODS: We completed an online cross-sectional survey. Participants (n = 207) were staff working on-site in LTCH in Ontario, Canada since March 1, 2020, with direct or indirect experience with the isolation of residents. 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 isolation 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 (odds ratio (OR) 0.41, 95% CI 0.19-0.87) with 48% of users reporting the DIT was helpful in reducing their level of moral distress. CONCLUSIONS: Isolation as an ICP measure in LTCH environments creates moral distress among staff which is a barrier to its effectiveness. ICP guidance to LTCH would be strengthened by the inclusion of a dementia-specific ethical framework that addresses how to minimize the harms of isolation on both residents and staff.

Free to be: Experiences of arts-based relational caring in a community living and thriving with dementia.

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 grounded in relational inquiry and caring focuses on relationships through the medium of the arts. DESIGN: A 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. METHODS: Twenty-five participants were recruited from the Academy and interviewed in one-to-one in-depth interviews or small groups. Participants included five persons living with dementia, eight family members, four staff, five artists, one personal support worker, and two volunteers. Participants were asked to describe their experiences of relational caring or relationships in the Academy space. FINDINGS: Three thematic patterns emerged, which address the research objectives.Relational caring is experienced when:freedom and fluid engagement inspire a connected spontaneous liveliness;embracing difference invites discovery and generous inclusivity; andmutual affection brings forth trust and genuine expression. CONCLUSIONS: Findings contribute to the growing body of knowledge about both relational caring and arts-based practices that call forth a different ethic of care-one that is relational, inclusive, and intentional. Findings also shed light on what is possible when a relational caring philosophy underpins arts-based practices-everyone thrives.

Moving Toward the Promise of Participatory Engagement of Older Adults in Gerotechnology.

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 providing advice or feedback in the early or later phases of research. A key barrier to more meaningful and active engagement of older adults is a lack of understanding as to how participatory design differs from other participatory approaches, and in particular, participatory action research. We address this gap in understanding by exploring the theoretical similarities and differences of participatory design and participatory action research, including their scope, goals, and the nature of the involvement of older adults in each. We conclude with key barriers that are critical to address in order to achieve greater involvement of older adults in gerotechnology and to broaden and enrich the goals of this field.

Dementia and sexuality in long-term care: Incompatible bedfellows?

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.

Critical Characteristics of Housing and Housing Supports for Individuals with Concurrent Traumatic Brain Injury and Mental Health and/or Substance Use Challenges: A Qualitative Study.

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 this complex and understudied group in the context of siloed service systems. This study aimed to describe critical characteristics of housing and housing supports for individuals with concurrent TBI and MHSU from the perspectives of service users with TBI and MHSU and housing service providers. Using basic qualitative description, in-depth interviews were conducted with 16 service users and 15 service providers. Data were analyzed using thematic analysis techniques. Themes capture core processes in finding and maintaining housing and the critical housing supports that enabled them: (1) overcoming structural barriers through service coordination, education and awareness raising, and partnerships and collaborations; and (2) enabling engagement in meaningful activity and social connection through creating opportunities, training and skills development, and design of home and neighborhood environments. Implications for practice, including the urgent need for formalized TBI and MHSU education, support for service providers, and potential interventions to further enable core housing processes are discussed.

A rapid scoping review of end-of-life conversations with frail older adults in Canada.

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), Sociological Abstracts (ProQuest), and Applied Social Sciences Index and Abstracts (ProQuest). Searches used text words and subject headings (eg, MeSH, Emtree) related to 3 concepts: frailty, Canada, and EOL conversations. STUDY SELECTION: Twenty-one English-language articles were selected (ie, 4 reviews, 10 commentaries, 3 quantitative studies, 3 qualitative studies, 1 mixed-methods study) that included information about EOL conversations with frail older adults in the Canadian health care context. SYNTHESIS: In terms of having EOL conversations with frail older adults, this study found that many clinicians do not often and adequately discuss frailty and impending death with their older patients. Moreover, patients and their care partners do not have enough knowledge about frailty and death to make informed EOL decisions, leading to patients choosing more aggressive therapies instead of care focused on symptom management. In terms of barriers to EOL discussions, common barriers included a lack of trust between clinician and patient, inadequate EOL training for clinicians, and ineffective clinician communication with patients and families. Recommendations for improving EOL conversations include regular screening for frailty to prompt conversations about care and the use of an interprofessional approach. CONCLUSION: More empirical research is needed that uses exploratory methods to shed light on the contextual factors that may act as a barrier to EOL conversations. More research is also needed on the roles and responsibilities of interprofessional teams in screening for frailty and engaging in EOL conversations. Moreover, there is a need to better understand how frail older patients and their families want EOL conversations to unfold and what best facilitates these conversations.

Biomedicalization of end-of-life conversations with medically frail older adults - Malleable and senescent bodies.

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 between clinicians and medically frail older patients. Using the critical lens of biomedicalization we consider how two dominant discourses, successful aging and frailty, and subsequent constructions of bodies as malleable or senescent, shape patient subjectivities and influence normative expectations about appropriate healthcare conversations and the consumption of biomedicine for medically frail adults. We highlight the uneven ways medically frail older adults are clinically positioned as successful or frail agers and briefly discuss how gender, class, and race may impact this tension and ambiguity. We conclude by arguing that end-of-life conversations with medically frail older adults is constrained by the pervasiveness of the successful aging discourse and the tendency within medical institutions to construct older bodies as malleable and in need of medical intervention to promote health and longevity.

Exploring illness identity among children and youth living with cancer: A narrative review.

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 this review and each underwent thematic analysis. RESULTS: Cancer has both positive and negative influences on the identities of children and youth. Illness identity is expressed creatively through various communicative outlets. Further, external processes such as social support may influence cancer identity. A few studies cited cancer as a hindrance to adult identity development. CONCLUSIONS: Cancer has a profound impact on identity formation among children and youth. Many normative assumptions about time, identity, and child and youth development underlie the existing literature. Future researchers may adopt a critical lens to be inclusive of diverse identity experiences among children and youth with cancer.

Separate and Unequal: A Time to Reimagine Dementia.

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 sorely understaffed and lack a supportive, relational, and enriching environment. With a sense of moral urgency to address this crisis, we forged alliances across the globe to form Reimagining Dementia: A Creative Coalition for Justice. We are committed to shifting the culture of dementia care from centralized control, safety, isolation, and punitive interventions to a culture of inclusion, creativity, justice, and respect. Drawing on the emancipatory power of the imagination with the arts (e.g., theatre, improvisation, music), and grounded in authentic partnerships with persons living with dementia, we aim to advance this culture shift through education, advocacy, and innovation at every level of society.

Fit for Dialysis: a prospective 2-site parallel intervention trial of a filmed research-based drama to increase exercise amongst older hemodialysis patients.

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 recruited from two acute care hospitals in urban central Canada where they were receiving out-patient hemodialysis care. Participants at the intervention site viewed Fit for Dialysis prior to participating in a 16-week exercise program. Participants at the control site participated only in the 16-week exercise program. Physical activity, measured by total intradialytic exercise time (TIDE), and physical fitness, measured by the Two-Minute Walk Test (2MWT). Secondary measures included: Timed Up and Go (TUG), Grip Strength, Duke Activity Status Index (DASI), Godin Leisure-Time Exerciser Questionnaire (GLTEQ), and pedometer step count. RESULTS: TIDE, TUG, and GLTEQ were better at the intervention site compared to the control site at all time points measured. However, the change over time was not different between the sites. The 2MWT improved over time at the intervention site for those who exercised consistently. No significant differences between sites, or over time were found for any of the other measures. CONCLUSIONS: Further research is needed to determine the effectiveness of this intervention to facilitate the incorporation of exercise into the care and treatment of HD patients.