Just and inclusive end-of-life decision-making for long-term care home residents with dementia: a qualitative study protocol.

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 unable to express their end-of-life needs. As a result, people with dementia have fewer choices and limited access to palliative care. The purpose of this paper is to describe the protocol for a qualitative study that explores end-of-life decision-making processes for LTC home residents with dementia. METHODS/DESIGN: This study is informed by two theoretical concepts. First, it draws on a relational model of citizenship. The model recognizes the pre-reflective dimensions of agency as fundamental to being human (irrespective of cognitive impairment) and thereby necessitates that we cultivate an environment that supports these dimensions. This study also draws from Smith's critical feminist lens to foreground the influence of gender relations in decision-making processes towards palliative care goals for people with dementia and reveal the discursive mediums of power that legitimize and sanction social relations. This study employs a critical ethnographic methodology. Through data collection strategies of interview, observation, and document review, this study examines decision-making for LTC home residents with dementia and their paid (LTC home workers) and unpaid (family members) care partners. DISCUSSION: This research will expose the embedded structures and organizational factors that shape relationships and interactions in decision-making. This study may reveal new ways to promote equitable decision-making towards palliative care goals for LTC home residents with dementia and their care partners and help to improve their access to palliative care.

Defining and evaluating transdisciplinary research: implications for aging and technology.

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.

A qualitative exploration of work-related head injury: vulnerability at the intersection of workers' decision making and organizational values.

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 and safety science, which has focused on identifying risk at the level of the individual worker, population group, or organizational sector. Limited research has focused on the perspectives of the workers, a key stakeholder group for informing understanding of vulnerability to work-related head injury. This study explored workers' perspectives to better understand their decision-making and how and why their injuries occurred. METHODS: We conducted a qualitative study using in-depth semi-structured interviews with thirty-two adult workers who had sustained a work-related head injury. Workers were recruited from an urban clinic in central Ontario, Canada. Labour Process Theory informed the thematic analysis. RESULTS: Three hazardous work conditions were identified: insufficient training; inadequate staffing; and inattention to the physical environment. In addition, professional and organizational norms were implicated in vulnerability to head injury including putting the client before the worker and the pressure to work unsafely. The findings also highlight a complex interrelationship between workers' decision-making and professional and organizational norms that produces vulnerability to head injury, a vulnerability which oftentimes is reproduced by workers' decisions to work despite hazardous conditions. CONCLUSIONS: Our findings suggest that, beyond the need to redress the inattention to hazards in the physical environment, there is a need to address norms that influence worker decision-making to improve the safety of workers. Using Labour Process Theory highlights an important social dynamic within workplace sectors that could inform future development and implementation of multi-level and integrated public health strategies to reduce work-related head injury.

The meaning of mobility for residents and staff in long-term care facilities.

BACKGROUND: Although the physical and psychological effects of decreased mobility have been documented, little is known about what it means to be mobile from the institutionalized elders' perspective. Even less is known about nurses' perceptions regarding institutionalized elders' mobility and about mobility enhancing strategies. AIM: The purpose of this study was to generate knowledge about the phenomenon of mobility from both the nurses' and institutionalized elders' perspective. DESIGN: An exploratory qualitative design was used. Focus groups with residents and nursing staff were conducted in three long-term care facilities in a large metropolitan city in 1998. Ethical approval was received from the ethics committees in all three facilities prior to study implementation. Twenty long-term care facility residents and 15 nursing staff participated in the study. METHODS: A trained facilitator used an interview guide to moderate discussions in which residents' and nurses' opinions and feelings about mobility were solicited. The group responses were tape recorded, transcribed and coded. The codes reflected major concepts or abstractions of the data and emerged from the participants' verbal responses to the research questions. FINDINGS: Both groups identified mobility as being pivotal to the residents' quality of life and well-being. The residents viewed mobility as a means of freedom, choice and independence, and they made great efforts to maintain their mobility. The nurses also valued the importance of mobility and assisted the residents through preparatory care, environmental modifications and encouragement. Factors that related to the residents' willingness to be mobile, environmental barriers and the impact of waiting were compared between the two groups. CONCLUSION: Mobility involves more than the movement from one point to another. The nature of the assistive nurse-client relationship and the resident's subjective perspective must become central to understanding the meaning of mobility for residents in a long-term care facility.