Alisa Grigorovich

Qualitative meta-synthesis of survivors’ work experiences and the development of strategies to facilitate return to work

PurposeTo review the empirical qualitative literature on cancer survivors’ experiences of the return to work process in order to develop strategies for health and vocational professionals to facilitate return to work.MethodsA rigorous systematic search of five databases was completed to identify relevant qualitative studies published between Jan 2000 and July 2013. All potentially relevant titles and abstracts were reviewed by two reviewers. For studies that met eligibility, the full-text articles were obtained and assessed for quality. The collected evidence was then synthesized using meta-ethnography methods.ResultsIn total, 39 studies met the eligibility criteria and passed the quality assessment. The synthesis of these studies demonstrated that cancer diagnosis and treatment represented a major change in individuals’ lives and often resulted in individuals having to leave full-time work, while undergoing treatment or participating in rehabilitation. Thus, many survivors wanted to return to some form of gainful or paid employment after treatment and rehabilitation. However, there was also evidence that the meaning of paid employment could change following cancer. Return to work was found to be a continuous process that involved planning and decision-making with respect to work readiness and symptom management throughout the process. Nine key factors were identified as relevant to work success. These include four related to the person (i.e., symptoms, work abilities, coping, motivation), three related to environmental supports (i.e., family, workplace, professionals), and two related to the occupation (i.e., type of work/demands, job flexibility). Finally, issues related to disclosure of one’s cancer status and cancer-related impairments were also found to be relevant to survivors’ return to work experiences.ConclusionsThis review reveals that cancer survivors experience challenges with maintaining employment and returning to work following cancer and may require the coordinated support of health and vocational professionals.Implications for Cancer SurvivorsCancer survivors need integrated support from health and vocational professionals (e.g., assistance with defining work goals, determining work readiness, determining how symptoms may impact work performance, suggesting workplace supports, and accommodations) to maintain and return to work after cancer diagnosis and treatment. These supports need to be provided throughout the recovery and rehabilitation process.

Citizenship, human rights, and dementia: Towards a new embodied relational ethic of sexuality

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 sexual rights for persons with dementia in long-term residential care.

Principles for fostering the transdisciplinary development of assistive technologies

Abstract Developing useful and usable assistive technologies often presents complex (or “wicked”) challenges that require input from multiple disciplines and sectors. Transdisciplinary collaboration can enable holistic understanding of challenges that may lead to innovative, impactful and transformative solutions. This paper presents generalised principles that are intended to foster transdisciplinary assistive technology development. The paper introduces the area of assistive technology design before discussing general aspects of transdisciplinary collaboration followed by an overview of relevant concepts, including approaches, methodologies and frameworks for conducting and evaluating transdisciplinary working and assistive technology design. The principles for transdisciplinary development of assistive technologies are presented and applied post hoc to the COACH project, an ambient-assisted living technology for guiding completion of activities of daily living by older adults with dementia as an illustrative example. Future work includes the refinement and validation of these principles through their application to real-world transdisciplinary assistive technology projects. Implications for rehabilitation Transdisciplinarity encourages a focus on real world ‘wicked’ problems. A transdisciplinary approach involves transcending disciplinary boundaries and collaborating with interprofessional and community partners (including the technologys intended users) on a shared problem. Transdisciplinarity fosters new ways of thinking about and doing research, development, and implementation, expanding the scope, applicability, and commercial viability of assistive technologies.

Rethinking musicality in dementia as embodied and relational

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 engagement with citizenship discourse. Specifically we draw on a model of relational citizenship that recognizes that corporeality is a fundamental source of self-expression, interdependence, and reciprocal engagement. We articulate this argument with reference to the musicality of two residents living with dementia in long-term residential care; one example is drawn from an ethnographic study of selfhood in dementia and the other is from a study of elder-clowning. Relational citizenship brings a new and critical dimension to the discourse on music, ageing, and the body in contemporary society. It further highlights the ethical imperative to fully support musicality through institutional policies, structures and practices.

A longitudinal view of factors that influence the emotional well-being of family caregivers to individuals with heart failure.

ABSTRACT Objectives: Caring for community-residing patients with heart failure can affect caregivers’ emotional wellbeing. However, few studies have examined caregivers’ well-being longitudinally, or identified factors associated with positive and negative outcomes. The objective of this longitudinal cohort study was to examine changes in caregivers’ well-being over time, and to identify patient and caregiver factors associated with positive and negative outcomes. Method: Fifty caregiver/heart failure patient dyads were recruited from an acute care facility and followed in the community. All participants completed surveys at hospital admission and 3, 6 and 12 months later. Caregivers completed assessments of depression symptoms and positive affect and standardized measures to capture assistance provided, mastery, personal gain, social support, participation restriction, and patients’ behavioral and psychological symptoms. From patients, we collected demographic characteristics and health-related quality of life. Individual Growth Curve modelling was used to analyze the data. Results: Caregivers’ negative and positive emotions remained stable over time. Depression symptoms were associated with higher participation restriction in caregivers. Positive affect was associated with more personal gain and more social support. Patients’ health-related quality of life and their behavioral and psychological symptoms were not significantly associated with caregivers’ emotional outcomes. Conclusion: Interventions should be offered based on caregivers’ needs rather than patients’ health outcomes, and should focus on fostering caregivers’ feelings of personal gain, assisting them with securing social support, and engaging in valued activities.

Restricted Access: Older Lesbian and Bisexual Women's Experiences With Home Care Services.

This article reports on the findings of a study that explored older lesbian and bisexual women’s access to publicly funded home care in Ontario. Recent health reforms have increasingly shifted the bulk of care of individuals from health care institutions to private homes and communities. Although these reforms have had consequences for all individuals, they may be particularly problematic for this population of older adults who face added health risks and barriers. Sixteen women participated in a qualitative case study with semistructured interviews. Iterative thematic analysis was used to analyze the data along with the use of a feminist political economy framework. The analysis shows that older lesbian and bisexual women experience barriers to accessing needed care and lack additional supports with which to supplement publicly funded home care. This study deepens existing knowledge by demonstrating how chronic illness and sexual minority status can further exacerbate the consequences of rationing public care.

Integrating Citizenship, Embodiment, and Relationality: Towards a Reconceptualization of Dance and Dementia in Long-Term Care

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 dementia care. The instrumental reduction of dance to its application as a therapeutic tool can be traced to the contemporary movement towards cognitive science with an emphasis on embodied cognition. This has effectively elided a consideration of how the body itself, separate and apart from cognition, could be a source of intelligibility, inventiveness, and creativity. We argue for the need to broaden the therapeutic model of dance to more fully support embodied and creative self-expression by persons living with dementia. To achieve this, we explore how a relational model of citizenship that recognizes corporeality and relationality as fundamental to human existence brings a new and critical dimension to understanding the importance of dance in the context of dementia. Drawing on this model, we articulate a new kind of ethic characterized by a pre-reflective intercorporeal sensibility that requires the mobilization of public structures and practices to cultivate a relational environment for individuals living with dementia that supports human flourishing.

Raising the curtain on stigma associated with dementia: fostering a new cultural imaginary for a more inclusive society

ABSTRACT 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 public health strategy for reducing stigma and enhancing well-being. In this article we focus on survey data from an evaluation of a research-based drama called Cracked: new light on dementia. Our analysis illustrates the effectiveness of Cracked in reducing stigma by: decreasing health care practitioners’ and family carers’ prejudice, fostering critical reflection about relational practices, and fostering a commitment to individual and collective action to address stigma. Cracked is well-positioned to respond to urgent calls for culture change, which include reducing societal misconceptions and stereotypes around dementia and promoting inclusive and meaningful engagement of persons living with dementia across all levels of society.

Defining and evaluating transdisciplinary research: implications for aging and technology

Abstract 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, a scoping review was conducted on the impact of this approach on research processes, outcomes and uptake. Materials and Methods: A systematic search was conducted of aging, health/medicine, and technology literatures indexed in three electronic data bases (Medline/OVID, EBSCO, ProQuest) from 1 January 2005 to 31 December 2015. Search terms included three themes: (1) transdisciplinarity; (2) research outcomes and (3) social change. Results: Twenty articles met the inclusion criteria. We found that a transdisciplinary approach to research enhances integration of diverse knowledge, scientific and extra-scientific outcomes, capacity to engage in translational research and the uptake of research knowledge. We also identified a number of facilitators and barriers to successful implementation of this approach. No articles evaluating transdisciplinary research specifically in the context of aging and technology were found. Conclusions: Adoption of transdisciplinary research in aging and technology may foster greater uptake of technological innovation in the real-world by supporting integration of diverse knowledge and enhancing engagement of experiential and nonacademic stakeholders in the research and development process. However, supporting successful implementation of this approach requires investment of personal and structural resources. More research is needed to better understand the evidence base on the adoption of this approach in aging and technology projects. IMPLICATIONS FOR REHABILITATION Transdisciplinary research is context-driven and problem-focused and involves collaboration between academic and non-academic sectors. A transdisciplinary approach can enhance knowledge integration, scientific productivity and capacity and public involvement in research. Future research is needed to determine the effectiveness of transdisciplinarity for optimizing the development and uptake of assistive technologies.

Fit for Dialysis: a qualitative exploration of the impact of a research-based film for the promotion of exercise in hemodialysis

BackgroundExercise 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.MethodsWe 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-based principles of wellness) as well as the generative mechanisms of these effects (e.g. realism, aesthetics). We also explored the factors related to patients, family carers, and health care providers that influenced engagement with the film, and the successful uptake of the key messages of Fit for Dialysis. We conducted qualitative interviews with 10 patients, 10 health care providers, and 10 family carers. Data were analyzed using thematic analysis.ResultsThe film was perceived to be effective in increasing patients’, family carers’ and health care providers’ understanding of the importance of exercise and its benefits, motivating patients to exercise, and in increasing encouragement by family carers and health care providers of patient exercise. Realism (e.g. character identification) and aesthetic qualities of the film (e.g. dialogue) were identified as central generative mechanisms.ConclusionsFit for Dialysis is well-positioned to optimize the health and wellbeing of older adults undergoing hemodialysis.Trial registrationNCT02754271 (ClinicalTrials.gov), retroactively registered on April 21, 2016.