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.

Bakgrund: Diabetes typ-1 är en kronisk sjukdom med livslång behandling som kräver daglig egenvård. Sjukdomen kan orsaka akuta som såväl långsiktiga livshotande komplikationer. Förekomsten av sjukdomen hos barn ökar i Sverige och globalt. Unga barn besitter inte förmågan att ansvara över behandlingen och därför blir föräldrarna behandlingsansvariga. I sjuksköterskans omvårdnadsansvar ingår bland annat personcentrerad vård. Kärnkompetensen personcentrerad vård innebär att vårdpersonalen ser hela individen och gör denne delaktig i sin vård. Vidare bör en personcentrerad vård samverka med en familjecentrerad vård, där familjen betraktas som en helhet då sjukdomen ger upphov till olika upplevelser hos familjemedlemmarna. Syfte: Att beskriva föräldrars erfarenhet av att ha barn med diabetes typ-1. Metod: En litteraturöversikt baserad på tio kvalitativa originalartiklar. Till databassökningen användes Cinahl Complete och PubMed. De ämnesord som användes vid sökningarna i databaserna var – diabetes mellitus typ 1, parent, life experiences och life style changes. Analysen genomfördes med inspiration av Fribergs metod. Kvalitetsgranskningen utfördes med hjälp av sju av Fribergs 14 föreslagna granskningsfrågor. Resultat: I litteraturöversiktens resultat framkom tre teman; ”Erfarenheter av en förändrad vardag”, ”Erfarenheter av ständig oro” och ”Erfarenheter av det stora ansvaret”.  Diagnostillfället upplevdes av föräldrarna som ett tillfälle präglad av rädsla, chock och sorg. Sjukdomen förändrade föräldrarnas vardag och för att hantera den förändrade vardagen var en anpassning nödvändig. Sjukdomen innebar en ständig rädsla hos föräldrarna som oroade sig över flera faktorer kopplat till sitt barns sjukdom, hälsa samt föräldrarnas förmåga att hantera barnets sjukdom. Vidare framkom att föräldrarna behövde bära ett stort ansvar som bland annat innefattade övervakning av barnet, ständig kontakt med barnets skola, svårigheter att lämna bort barnet samt daglig omvårdnad och behandling kopplat till barnets sjukdom. Ett ansvar som upplevdes utmanande och överväldigande. Slutsats: Resultatet visar att föräldrar till barn med diabetes typ-1 lever med en oro och ett stort ansvar som påverkar det dagliga livet. Att förstå föräldrarnas upplevelser och erbjuda stöd är av vikt för att förhindra ohälsa och främja livskvalité hos föräldrarna. / Background: Diabetes typ-1 is a chronic disease with lifelong treatment that requires daily self-care. The disease can cause acute as well as long-term life-threatening complications. The incidence of the disease in children is increasing in Sweden and globally. Young children do not possess the ability to be responsible for the treatment and therefore the parents become responsible for the treatment. The nurse’s responsibilities includes, among other things, person-centred care. The core competence of person-centred care means that the care staff sees the whole individual and involving them in their own care. Furthermore, a person-centred care should cooperate with a family-centred care, where the family is considered as a whole, as the illness gives rise to different experiences in the family members. Aim: To describe parents’ experience of having children with diabetes typ-1. Method: A literature review based on ten qualitative original articles. Cinahl Complete and PubMed were used for the database search. The keywords used in the searches in the databases were – diabetes mellitus typ 1, parent, life experiences and life style changes. The analysis was carried out with inspiration from Friberg’s method, and the quality review was carried out using seven of Friberg’s 14 suggested review questions. Results: In the results of the literature review, three themes emerged: “Experiences of a changed daily life”, “Experiences of constant worry” and “Experiences of the great responsibility”. The diagnosis was experienced by the parents as an occasion characterized by fear, shock, and sadness. The disease changed the parents' everyday life and an adaptation was necessary to manage the changes. The disease meant a constant fear for the parents who worried about several factors linked to their child’s illness and health but also connected to their own ability to handle the child’s illness. Furthermore, it emerged that the parents needed to handle a great deal of responsibility, which included, among other things, monitoring their child, constant contact with the child’s school, difficulties in leaving the child as well as daily care and treatment linked to the child’s illness. A responsibility that was experienced as challenging and overwhelming.  Conclusions: The results shows that parents of children with diabetes typ-1 live with a concern and a great responsibility that affects their daily life. Understanding the parents’ experiences and offering support is important to prevent unhealth and promote the parent’s quality of life.