Alzheimer's disease impacts many older adults within the United States and African Americans are at a higher risk for developing Alzheimer's disease. Most of their care is provided by their adult daughters, who are often tasked with managing multiple care responsibilities within their families. Prior research has examined one aspect of the caregiving experience for African American caregivers but not how their intersecting identities impact their experiences. As such, this study served to contextualize and highlight the nuances of their caregiving experiences. Using Intersectionality Theory as a guiding theoretical framework, this qualitative study explored how African American adult daughter caregivers navigated their family relationships while caring for a parent with Alzheimer's disease. Semi-structured interviews were conducted with twenty-six African American adult daughters caring for a parent with Alzheimer's disease. Findings revealed that 1) families came together by collaborating on decisions, connecting as a family and speaking regularly, and directly assisting and helping the caregiver, 2) family ideology about African American women and care influenced what the family expected of caregivers and what caregivers expected of themselves, and 3) caregivers are under compounding amounts of stress related to general caregiving strain, time, and racism/discrimination. These findings provide a more contextualized and holistic depiction of African American caregivers and their families. Future research and practical implications are discussed. / Doctor of Philosophy / There are high rates of Alzheimer's disease among older adults within the United States and African Americans are more likely to develop Alzheimer's disease. Alzheimer's disease impacts the individual, their main caregivers, and their families. Adult daughters provide most of the care to individuals with Alzheimer's disease while also having other responsibilities within their families. The goal of this study was to get a better understanding of changes in caregivers' family relationships as they care for their parents with Alzheimer's disease. I interviewed 26 African American adult daughter caregivers. The caregivers shared important information about changes in their family relationships and explained how they had been impacted by caregiving. Findings revealed that African American families came together to support the caregiver, families have unspoken rules about how care should be provided, and caregivers experience high amounts of stress because of caregiving. The results can help clinicians, medical professionals, and policymakers be better able to support African American families of individuals with Alzheimer's disease. Future research studies and best practices for clinicians are discussed.

Sleep disturbances are common in persons with Alzheimer's disease (AD) (Hart et al., 2003) and pose a great strain on their family caregivers (Hope, Keene, Gedling, Fairburn, & Jacoby, 1998) including their emotional functioning (Schulz & Martire, 2004). The current study is the first to examine the impact of daily sleep and mood in persons with AD on their caregiver's sleep and emotional functioning. The study examined sleep and mood across eight days in 40 family caregivers of persons with AD. It was hypothesized that poor sleep in the person with AD person would have a negative impact on caregiver emotional functioning the next day. Furthermore, it was hypothesized that sleep disruption or the mood in the person with AD would mediate the association between AD person sleep and caregiver mood. The results demonstrated a direct link between poor sleep in persons with AD and caregiver negative affect (NA), but not positive affect (PA). The results also indicated that poor caregiver sleep and NA in the person with AD partially mediated the relationship between AD person sleep and caregiver NA. The results suggest that addressing AD person and caregiver sleep and AD person affect may improve caregiver emotional functioning. Improving AD person sleep and mood, and caregiver emotional functioning has important implications that may prolong the time until institutionalization.

This thesis is an institutional ethnography (IE) examining the social organization of Community Care Access Centre School Health Support Services (CCAC SHSS) for children with diabetes in Ontario schools. More specifically, it explicates the social relations embedded in, and coordinating the work organization of mothering (parenting) and nursing in the school setting. The inquiry begins in my personal experience as a mother of a child with diabetes starting kindergarten, and the troubles I encountered in getting the care and attention needed to keep my child safe at school. Starting from experience, a place outside of theory and institutionalized categories and discourse, I set out on a journey to discover the social organization that coordinates my experience, and to seek answers to my query: how are school health supports put together in such a way that I, as a parent, am left feeling worried about my child’s safety when she is at school, have had to fight to secure the much needed ‘diabetes care’, and even then, am often called upon to provide voluntary supplementary healthcare work to ensure her safety at school? I have structured this thesis into two main parts. The first part provides the set-up for this thesis. First, I orient readers to this distinctive way of doing an IE, directing their attention to how I used the core IE concepts in this research and calling upon them to read the remainder of the thesis taking up this distinctive theoretical and conceptual lens. Indeed, what we know and how we know it has much to do with how knowledge is socially organized. Then, I go on to examine the different ways of knowing about ‘diabetes care’, how these distinctive ways of knowing create a disjuncture for me as a parent and how this disjuncture is used to establish the research standpoint to begin and direct the explication. The last chapter in this part situates health supports for children with diabetes within the services provided by public-funded home care. I sketch three decades of the history of reform and organizational restructuring of home care in Ontario, in particular, the introduction of privatizing relations into the local practices of community nursing and the creation of CCACs. These relations of privatization reorganized the home care sector, the workforce, and the relation between the ‘state’ and its citizens. What went on before sets the groundwork for what can happen next, and it is under this context and conditions in which my inquiry is set. The second part consists of four academic journal manuscripts. They are the descriptive analysis for this IE. These four chapters describe what I have learned and discovered in doing this research, and three of them in particular provide an empirical analysis showing how school health supports for children with diabetes are put together such that the troubles I experienced came into being. These four chapters are conventionally referred to as research ‘findings’ in traditional qualitative research methodology. Each of these chapters speaks to a particular way of knowing about ‘diabetes care’. One focuses on parents’ experiential ways of knowing based on the actualities of their daily and nightly everyday world to show the amount of work and knowledge required to care for and to keep their children with diabetes alive; while the other three underscore the CCACs’ institutional ways of knowing about ‘diabetes care’ in the school setting. I show how these objectified ways of knowing derived from institutional texts (Standardized CCAC Medial Orders, information technology software and the Diabetes Checklist for Independence) are used to determine a child’s eligibility to receive health supports at school. These objectified textual forms of knowing are removed from the actualities of people’s real life circumstances, and differ significantly with how and what parents know is needed for their children with diabetes to stay well and safe at school. It is precisely this form of text-mediated social coordination that leaves parents feeling worried and draws them in to doing voluntary healthcare work at school, without which the child’s safety and the continuity of care is not possible. Tracing the institutional relations organizing how health support services for children with diabetes actually happen in the classroom, I show the kind of work expected of parents, and demonstrate that the CCAC SHSS policy and practices only ‘work’ as they should with the incorporation of parents’ ‘unauthorized’ knowledge and their ongoing voluntary complementary healthcare work. While it is in parents’ interests to ensure their children’s safety and well-being at school, there are differences between parents in how, and if, they can deliver their knowledge and resources. / Thesis / Doctor of Philosophy (PhD) / Diabetes is a chronic health condition that requires individuals with diabetes or their families to maintain a daily well-coordinated and intensive diabetes self-care routine. Lapses in this complex daily regimen can have devastating immediate and long-term consequences. How children’s diabetes, that is children’s health and well-being, are cared for at school is of concern for parents. The inquiry begins in my personal experience as a mother of a child with diabetes starting kindergarten, and the troubles I encountered in getting the care needed to keep my child safe at school. Starting from experience, this thesis examines how the institutional context and routine practices of diabetes care in school affects the care children actually receive. Despite legislation that requires accommodations for students with disabilities, what I found in this study is that parental involvement (which is inequitably available) is essential to ensure diabetes care is adequate for children in schools.

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