THE SOCIAL ORGANIZATION OF SCHOOL HEALTH SUPPORT SERVICES FOR CHILDREN WITH DIABETES IN ONTARIO SCHOOLS: AN INSTITUTIONAL ETHNOGRAPHY

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?
\nI 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.
\nThe 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.
\nTracing 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.

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