Alison Phinney

Patients who remain in hospital once their health has stabilized are designated Alternate Level of Care (ALC). This often occurs for patients living with dementia when care needs exceed what can be managed at home. Overall, ALC patients living with dementia experience lengthy hospitalizations. Unfortunately, there is little research that takes into account the experiences and needs of these patients. This Interpretive Description study, theoretically grounded in personhood and social citizenship perspectives, focused on the patients’ experiences to address this gap in research and to better understand how care for ALC patients living with dementia can be improved.Twenty-one individuals participated in this study: eight patient participants designated ALC living with dementia, six family members, and seven nurses. Data collection methods comprised of participant observations and general observations of the study setting, including patient rounds and meetings, totaling 106 hours of observations. Fourteen semi-structured interviews were conducted with family member and nurse participants, and with one patient participant. Informal conversations were undertaken with patient participants who did take part in interviews. Findings from this study are presented in three parts, and include a selection of found poems. Firstly, the daily life of ALC patients living with dementia is explored, revealing the challenges the patients regularly encountered over long hospitalizations. Secondly, the distress that the patients experienced on a recurring basis is brought into sharp relief. Thirdly, the agency and resiliency of the patients is brought to the fore, widening the lens from which patients living with dementia can be considered. Findings are discussed in the context of the ambiguity of ALC care, the pervasive liminality the patients experienced, and prevailing discourses around the behavioural and psychological symptoms of dementia. Implications for nursing practice include the need to acknowledge and foster the abilities of patients living with dementia. The behaviour narrative and labeling prevalent in hospitals must also be challenged. Lastly, nurses need to recognize the significant transition that is the ALC experience. This study advocates for person-centered and inclusive nursing care, where ongoing needs are recognized and addressed, particularly for ALC patients living with dementia who are waiting for home.

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Quality of life and well-being for people living with advanced dementia has been positively associated with engaging in meaningful activities and relationships; however, there is limited understanding of what constitutes meaningful engagement, and how it can best be supported for people living with advanced dementia in long-term care homes. Typically, studies have sought the perspectives of family and care providers in exploring experiences of meaningful engagement for these individuals, while few studies have included the perspectives of residents living with advanced dementia themselves. In my dissertation research I sought to address these gaps, gaining a richer and more nuanced understanding of the ways that older adults living with advanced dementia in long-term care homes experience meaningful engagement.I employed a qualitative applied research design, drawing on focused ethnography. Focused ethnography supports a shortened field time and the use of technology in data gathering. My methods included video-recording to capture the experiences of residents living with advanced dementia that are visible but difficult to capture through interview. Participant observation data was gathered across a range of settings in a long-care home while the residents engaged in both structured and unstructured activities and interactions. I also conducted interviews with family members and nursing and allied care staff. Thus, data reflected a range of sources and methods providing multiple perspectives for rich analysis.I observed many examples of meaningful engagement through activities and social connections that occurred during arts-based programming and the quiet routines of everyday life. Drawing on embodied and relational lenses, I found that the residents continued to express creativity, humour, enjoyment, and agency. In contrast, family and staff members typically described the residents in terms of their current losses, positioning their abilities and accomplishments in the past. They drew on these past perspectives in supporting meaningful engagement with the residents through building connections between the past and present. Ultimately, my findings point to the persistent personhood and enduring ability of residents living with advanced dementia to experience meaning. My hope is that these findings will promote long-term care programming better tailored to support their quality of life.

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Patients with dementia in acute care often experience poor outcomes, as nurses andother staff in hospitals are not equipped to provide good dementia care. Person-centred carehas been recognized as the best practice for dementia care, but its application in hospitalenvironments remains unclear. This action research involved patients with dementia, a teamof staff members, and public advisors to co-create changes in a medical unit.The objectives of the project were to: (a) develop person-centred care in a medicalunit, (b) explore ways to support the involvement of patients with dementia in research, (c)examine the processes of staff engagement for bringing together staff from differentdisciplines to co-inquire, and (d) evaluate the impact of research on the process of changeand identify the lessons learnt to inform practice, education, policy, and research. Variousmethods were used such as: interviewing patients with dementia, focus group sessions with ateam of inter-disciplinary staff, and participant observations.In this thesis, I argue for a new positive and collaborative approach that views changeas a continuous process. In the past, the problem-focused model that sees change as fixingpeople has largely failed with regards to advancing practice developments in dementia care.An important outcome of this research is the heuristic guide ‘Team Engagement ActionMaking’ (TEAM), which can be used to support teams to engage staff in co-creating positivechange. The results of this study indicate that appreciative inquiry is a useful strategy forengaging people on a team to learn together and to co-create a better future of care. Thefindings also suggest that more attention should be paid to the dynamic inter-connection ofresearch and practice, rather than just one or the other. The results demonstrate that actionresearch can affect the process of change by generating positive energy, attitude change, and momentum for action activities in the unit and beyond. Future research should furtherexplore strategies that would maximize the potential of bringing patients, families,researchers, and practitioners to work together for positive change.

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The purpose of this ethnographic case study research was to examine the experiences of people with advanced dementia nearing the end of life, how carers and family constructed and responded to the psychosocial, spiritual, and physical needs of the residents, and how discursive and contextual factors shaped residents’ experiences. The project comprised case studies of two women with advanced dementia who were identified as nearing the end of life, their carers, and family members. Over an 18-month period, I conducted over 600 hours of participant observation, 30 hours of video observation, and in-depth interviews with 23 carers and 2 family members in a nursing home in British Columbia, Canada. Informed by a dialogical perspective, I employed a case-oriented analysis to construct a rich textual and visual portrait of each woman’s life. The first case study illustrated how carers and family understood the resident’s experiences according to four storylines: 1) the deteriorating body; 2) the institutionalized body; 3) the loved body; and 4) the ambiguous body. These storylines culminated in several tensions that underscore the challenges in caring for someone with advanced dementia nearing the end of life, with the notion of liminality providing a framework for discussing this case. The second case study focused on the co-construction of dialogical relationships between the resident, her carers and family. The findings demonstrated that interactions were marked by an ethical obligation towards the resident that went beyond the boundaries of fulfilling instrumental tasks to encountering and acknowledging the resident as a unique person. Findings are discussed in terms of an aesthetic approach to dementia end-of-life care. The theoretical considerations of silence, the cultivation of knowledge, and the moral obligation for carers to nurture dialogical I-Thou relationships provided a framework for integrating the findings. Together, these case studies inform our understanding of the lived experiences of residents with advanced dementia who are nearing the end of life, and how carers and family come to understand and respond to these experiences.

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Nurses’ understandings of older patients’ cognitive function are central to how they determine and enact nursing care of older people in hospital, however, it remains unclear how nurses develop these understandings. The nursing literature concerned with how nurses determine actions in practice has begun to shift from instrumental views of reasoning to recognition that judgments are based on complex knowledge and are embedded in the particular context of nurses’ work. This study aimed to make explicit the complex, situated practical judgments of nurses about the cognitive function of older people in hospitals. The conceptual foundation of the study was informed by an integration of Aristotle’s notion of phronesis and Foucault’s understanding of power. A focused ethnographic study was conducted on two units in an urban general hospital over one year. Data were collected from 21 nurse informants through observations and interviews, and an analysis of documents used in their practice. Data analysis was guided by an analytic framework reflective of the conceptual framework. The findings showed that practical judgments about the cognitive function of older patients in hospital were structured through social relations, and nurses worked within that structure toward a complex understanding of patients’ cognitive function that would enable them to improve the situation of patients. Furthermore, ensuring safety and physiological stability emerged as the goals of nursing care related to the cognitive function of older patients and provided direction for practical judgments, including what evidence was sought and how it was used in deliberations about action. This articulation of nurses’ practical judgments about the cognitive function of older patients in hospital is a foundation for further inquiry into the context of nursing practice, educating new nurses on the complexity of nursing judgments and examining policy related to the structures guiding acute care nursing.

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Purpose: The movement away from task-oriented care toward the consistent provision of person-centred care (i.e., care based on residents’ needs and preferences) is widely recognized as the goal of the residential care culture change movement. The purpose of this study was to explore why the attainment of this goal has remained elusive for many residential care facilities (RCFs), despite significant effort to alter practice. Methods: I conducted an institutional ethnography to explore the textually mediated work processes that influence the day-to-day work practices of front-line care staff in RCFs. The social organization of RCFs was explored through the observation of resident care attendants’ (RCAs') practices and the interaction of those practices with institutional texts. The data were derived from three RCFs and included 104 hours of naturalistic observation, 76 in-depth interviews, and document analysis. Results: Practical access to institutional texts containing care-related information was dependent on job classification. Regulated healthcare professionals (e.g., RNs) frequently accessed these texts to exchange information. Although RCAs provided 80% of the care to residents, in all sites studied, they lacked practical access to the institutional texts that contained important information relevant to the residents’ individualized care needs and preferences (e.g., assessments, care plans, social histories). The RCAs primarily received and shared information orally; however, the organizational systems in the facilities studied mandated the written exchange of information and did not formally support an oral exchange. Consequently, the oral exchange of care information was largely dependent upon the quality of the RCAs' working relationships with one another and especially with management. Implications: Access to detailed knowledge of residents’ needs and preferences is fundamental to the provision of person-centred care. The transfer of this knowledge to and between front-line care staff is dependent upon the quality of the relationships managers develop with and among RCAs. Initiatives aimed at building supportive and collaborative work teams are essential to the inclusion of RCAs in the care planning process and to the attainment of the goal of person-centred care.

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The majority of recipients of nursing care in Canadian hospitals are older adults; however, research about nurses’ knowledge of aging, beliefs about aging, and institutional contexts and their influence on nursing care practice with older adults remains limited. In this study, grounded theory methods, guided by symbolic interactionism, were used to explore nursing practice with hospitalized older adults. The theory orchestrating care was developed after analysis of 375 hours of participant observations and 35 interviews with 24 participants. The theory of orchestrating care explains how nurses are continuously trying to manage their work environment by understanding the status of the patients on their unit, mobilizing the assistance of others, and stretching available resources to resolve their problem of providing their patients with what they perceived as “good care” while sustaining themselves as “good” nurses in their practice that they described as hard, misunderstood, and under-resourced. They did this through the two subprocesses of building synergy and minimizing strain. Building synergy explains how nurses leverage and share information and gain the assistance of others. Minimizing strain explains how nurses use available resources, support and guide one another, and reframe their practices in ways that create a supportive nursing network.Nurses looked for allies as they developed their lines of action to resolve their problem in work environments they characterized as problematic. When they did not regard other care providers and leaders as allies, nurses focused on their top priority of safety and turned inward for support from other nurses in the hope of relieving their feelings of being overwhelmed, pressured, ignored, and misunderstood. Turning inward to resolve their problem both aided the nurses (by providing short-term relief) and inhibited them (by increasing their isolation). It also prevented them from articulating their challenges to their managers, from building synergy with other healthcare professionals, and from viewing their nursing team differently. Care of hospitalized older adults can be improved by listening to nurses who are working with this population, examining the hospital systems that constrain these nurses’ practice and from nurses critically reflecting on how their practices may be contributing to their challenges.

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Long-term residential care (LTRC) is a complex sociopolitical milieu where people from diverse backgrounds come to live and work together. In recent years health care restructuring has resulted in the closure of facilities; health care policy has narrowed the population that accesses LTRC so that only those who are the most medically and socially complex are admitted; and there has been a transformation of the work force, a workforce that is mainly comprised of Women of Colour and is among the lowest paid in health care. The purpose of this study was to critically examine the organization of care in LTRC within this context.The theoretical perspective guiding the study was informed by postcolonialism, postcolonial feminism, intersectionalities, and Foucaudian epistemology. The method of inquiry for the study was critical ethnography, which allowed for critical analysis of `taken for granted' assumptions in the organization of care.Over a period of ten months, I was immersed in two LTRC facilities in the Lower Mainland of British Columbia. Field work consisted of approximately 218 hours of participant observation. I conducted 51 interviews with administrators, family members, residents, and staff. I reviewed relevant provincial policies and facility-based policies and procedures. I also collected quantitative data related to resident transitions in the health care system (for example, admissions, discharges, and hospital admissions), and staffing levels.Findings from this study were discussed in three key themes. First, a systematic decommissioning of citizenship occurred for residents and staff in this setting. Second, the impact of health care restructuring over the past decade had important consequences for relationships between residents, family, and staff. Third, relational care took place in `stolen' moments that occurred despite heavy workloads. All of these themes were underscored by intra-gender oppression, relations of power, and influenced by discourses of ageism and corporatism, which ultimately played out in day to day interactions between those who live and work there. Recommendations from this study included: addressing the entrenched hierarchies in nursing, further examination of the public-private funding model in LTRC, and the introduction of an independent ombudsperson to ensure consistent, high quality care across the LTRC sector.

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