Background: Since March 2020, health systems around the world shifted to virtual care approaches as social distancing measures were recommended to stem the spread of SARS-COV-2, the virus responsible for the COVID-19 pandemic. For children and families living with type 1 diabetes, virtual consultations in pediatric diabetes care were rare prior to the pandemic but became the norm since the start of the pandemic. Data regarding glycemic outcomes and comorbidities in children living with type 1 diabetes mellitus (T1DM) during the pandemic are limited, and there is a need for these data to drive future care models design and delivery. Aim & Methods: The aim of this project was to assess the association of the COVID-19 pandemic with measures of glycemic control (HbA1c), hyperglycemia, hypoglycemia, diabetic ketoacidosis (DKA) and hospitalization for the period spanning March 2020-2021 at McMaster Children’s Hospital, a tertiary pediatric academic center in Hamilton, Ontario, Canada. Data from the onset of virtual care were compared with data from two years pre-pandemic. Results: The COVID-19 pandemic was not associated with changes in HbA1c (MD -0.14, p=0.058), hospitalization (OR 0.57, p=0.068), or hypoglycemia (OR 1.11, p=0.484), but was significantly associated with the increase in reported hyperglycemia (OR 1.38, p=0.003) and reduction in DKA presentation (OR 0.30, p=0.009). Conclusions: Glycemic control was stable during the early stages of the COVID-19 pandemic, when virtual and hybrid care models prevailed in diabetes care. These results suggest that patients and their families were able to adapt to the uncertain circumstances of the pandemic. Virtual consultations for pediatric diabetes did not hinder glycemic control, and likely aided in the maintenance of diabetes management. Longitudinal studies are necessary before virtual consultations should be recommended to replace in-person clinic visits, but the initial data seem encouraging. / Thesis / Master of Science (MSc) / The COVID-19 pandemic restricted face-to-face healthcare-based interactions to limit the spread of the virus. These restrictions posed as a challenge for children and youth with type 1 diabetes mellitus (T1DM), who relied exclusively on in-person clinic visits as part of their care regimen pre-pandemic. In this retrospective study, we assessed the association of the first year of the COVID-19 pandemic with measures of glycemic control (HbA1c), diabetic ketoacidosis (DKA), hospitalization, hyperglycemia, and hypoglycemia, compared to two years pre-pandemic. We determined that children living with type 1 diabetes had no deterioration of glycemic control measures, apart from an increase in hyperglycemia, during the first 12 months of the pandemic. This study provides insights into health outcomes of children living with T1DM in the early stages of the pandemic and offers a roadmap to guide the further avenues of exploration needed to assess the full impact of the pandemic on this population.

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Bakgrund: Diabetes mellitus typ 1 [T1D] ökar över hela världen. T1D är bland de vanligaste endokrina och autoimmuna sjukdomarna hos barn och ungdomar. För att identifiera problemområden som kan leda till förbättringar av omvårdande och minskning av de negativa upplevelserna, genomförs denna studie av barns och ungdomars upplevelser av lever med T1D.  Syfte: Studiens syfte var att beskriva barns och ungdomars upplevelser av att leva med T1D. Metod: En allmän litteraturstudie baserad på Polit och Becks niostegsmodell. Tio artiklar inkluderades och granskades utifrån Graneheim och Lundmans kvalitativa innehållsanalys. Resultat: Tre kategorier identifierades: Nya känslor, Utmaningar med sociala sammanhang och Livsstilsförändringarnas betydelse och sex tillhörande underkategorier. Resultatet visade att barn och ungdomar upplever många negativa känslor, vanligtvis kopplade till egenvård.  Slutsats: Att leva med T1D som barn eller ungdomar är en komplex resa i livet. Genom att vårdpersonalen blir medveten om tankar och känslor som rör sig inom barn och ungdomar kan vården bli bättre. Det behövs mer studier som fokuserar på detta område. / Background: Diabetes mellitus type 1 [T1D] is increasing worldwide. T1D is among the most common endocrine and autoimmune diseases in children and adolescents. This study of the experiences of children and adolescents living with T1D is being done to identify areas of concern that could lead to improvements in care and reduction of negative experiences. Aim: To study was to describe children and adolescents' experiences of living with T1D. Method: A general literature study based on Polit and Beck's nine-step model. Ten articles were included and reviewed based on Graneheim and Lundman's qualitative content analysis. Results: Three categories were identified: New emotions, Challenges with social context and the importance of lifestyle changes and six associated subcategories. The results showed that children and adolescents experience many negative emotions, generally linked to self-care. Conclusions: Living with T1D as a child or adolescent is a complex journey in life. By making the care staff more aware of the thoughts and feelings that move within children and adolescents, the care can be improved. More studies focusing on this area are needed.

Diss. (sammanfattning) Linköping : Univ., 2004. / Härtill 5 uppsatser.

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Type I Diabetes Mellitus (T1DM) is a major health problem and a burden for affected young individuals, as well as for society. It is among the most prevalent paediatric disorders, affecting an estimated 1.7 per 100 children and adolescents. Given the complexity of diabetes treatment regimens, it is not surprising that children, adolescents, and their families often have difficulty adhering to these regimens. Studies have found that the overall adherence rate among children and adolescents with diabetes is about 50%. It has also been found that adherence to T1DM often tends to decrease when the adolescent begins to assume most of the responsibility for managing the disease and the parents‟ role starts to decline. However, literature indicates that adolescent patients‟ adherence is poor and an important strategy to improving their metabolic control is to increase self-care. The most common age of onset for T1DM is between 10-14 years. The adolescent population is highly neglected in current research on diabetes, because the focus tends to favour children and not adolescents. It is widely recognised that glycaemic control in adolescents is complex, challenging and dependent on interconnected relationships between numerous inputs at individual, family, community and health service levels. Optimal care of adolescents with diabetes has not been subjected to rigorous scientific studies, and research results related to optimal glycaemic control are conflicting. Development and continuous evaluation of best practices pertaining to diabetes mellitus remains one of the major objectives of diabetes care, possibly allowing a delay in and/or prevention of later complications. Research indicates that adolescence is the one age group where there has been no discernible improvement in health over the last 20 years. A great number of research studies on the subject of diabetes are done globally, but less literature, especially in the South African context, can be found that focuses on and explain the experiences of adolescents with T1DM with regard to their treatment adherence. This qualitative study explored the experiences of adolescents with T1DM. A purposive sample (n=7) of young adolescents between the ages of 13 and 15 willingly participated in the research study to explore and describe their experiences with managing their treatment regimen. In-depth interviews were conducted to collect rich descriptive data, followed by participants‟ verbal reflections once a week for the duration of a month. After the in-depth interviews and weekly reflections, the researcher held a focus group interview with all the participants. Transcribed data were analysed by means of thematic analysis from which themes and subthemes were derived. The participants expressed both positive and negative emotions associated with their diabetes; they experienced a lack of understanding by significant others because of a lack of knowledge, interest or support regarding their diabetes; they mentioned that they continually need age-appropriate support and parental involvement, even though they manage diabetes through their own processes; and lastly, participants struggled with a fear of friends‟ and peers‟ perceptions. From the findings it is clear that in order to cope, the adolescents need not only medical treatment and education about diabetes (T1DM), but emotional support, supervision and repeated reinforcement to achieve effective self-management. The basic suggestion is that diabetes care for children and young people should include routine assessment of the psychological and social pressures on the adolescent and the family so that strategies can be put in place to give support and education as needed and as appropriate. The researcher also recommends that school personnel must be educated about diabetes so that they can understand the changing medical and psychosocial needs of the adolescent and can help him/her to participate fully in all the available work, sport, and leisure activities. Models of legislation and training programmes for school staff specifically addressing the needs of children with diabetes in school have been developed in a number of countries such as Greece, Germany, Italy, Poland, Spain, Sweden, the UK and the USA. These programmes should be considered as an example to other countries. These best practices can serve as a foundation for national improvement. / MA (Psychology), North-West University, Potchefstroom Campus, 2015

Type I Diabetes Mellitus (T1DM) is a major health problem and a burden for affected young individuals, as well as for society. It is among the most prevalent paediatric disorders, affecting an estimated 1.7 per 100 children and adolescents. Given the complexity of diabetes treatment regimens, it is not surprising that children, adolescents, and their families often have difficulty adhering to these regimens. Studies have found that the overall adherence rate among children and adolescents with diabetes is about 50%. It has also been found that adherence to T1DM often tends to decrease when the adolescent begins to assume most of the responsibility for managing the disease and the parents‟ role starts to decline. However, literature indicates that adolescent patients‟ adherence is poor and an important strategy to improving their metabolic control is to increase self-care. The most common age of onset for T1DM is between 10-14 years. The adolescent population is highly neglected in current research on diabetes, because the focus tends to favour children and not adolescents. It is widely recognised that glycaemic control in adolescents is complex, challenging and dependent on interconnected relationships between numerous inputs at individual, family, community and health service levels. Optimal care of adolescents with diabetes has not been subjected to rigorous scientific studies, and research results related to optimal glycaemic control are conflicting. Development and continuous evaluation of best practices pertaining to diabetes mellitus remains one of the major objectives of diabetes care, possibly allowing a delay in and/or prevention of later complications. Research indicates that adolescence is the one age group where there has been no discernible improvement in health over the last 20 years. A great number of research studies on the subject of diabetes are done globally, but less literature, especially in the South African context, can be found that focuses on and explain the experiences of adolescents with T1DM with regard to their treatment adherence. This qualitative study explored the experiences of adolescents with T1DM. A purposive sample (n=7) of young adolescents between the ages of 13 and 15 willingly participated in the research study to explore and describe their experiences with managing their treatment regimen. In-depth interviews were conducted to collect rich descriptive data, followed by participants‟ verbal reflections once a week for the duration of a month. After the in-depth interviews and weekly reflections, the researcher held a focus group interview with all the participants. Transcribed data were analysed by means of thematic analysis from which themes and subthemes were derived. The participants expressed both positive and negative emotions associated with their diabetes; they experienced a lack of understanding by significant others because of a lack of knowledge, interest or support regarding their diabetes; they mentioned that they continually need age-appropriate support and parental involvement, even though they manage diabetes through their own processes; and lastly, participants struggled with a fear of friends‟ and peers‟ perceptions. From the findings it is clear that in order to cope, the adolescents need not only medical treatment and education about diabetes (T1DM), but emotional support, supervision and repeated reinforcement to achieve effective self-management. The basic suggestion is that diabetes care for children and young people should include routine assessment of the psychological and social pressures on the adolescent and the family so that strategies can be put in place to give support and education as needed and as appropriate. The researcher also recommends that school personnel must be educated about diabetes so that they can understand the changing medical and psychosocial needs of the adolescent and can help him/her to participate fully in all the available work, sport, and leisure activities. Models of legislation and training programmes for school staff specifically addressing the needs of children with diabetes in school have been developed in a number of countries such as Greece, Germany, Italy, Poland, Spain, Sweden, the UK and the USA. These programmes should be considered as an example to other countries. These best practices can serve as a foundation for national improvement. / MA (Psychology), North-West University, Potchefstroom Campus, 2015

Diabetes typ 1 är en kronisk sjukdom vars incidens och prevalens ökar i Sverige. Sjukdomen debuterar vanligtvis i barndomen och medför livslång behandling. Därför krävs det att familjen lär sig att hantera och leva med sjukdomen i det vardagliga livet. Syftet med studien var att beskriva familjens erfarenheter av att leva med ett barn som har diabetes typ 1. Metoden som valdes var en litteraturöversikt. Studien bygger på 13 kvalitativa artiklar. Sökningen gjordes i databaserna CINAHL och PubMed. I resultatet framkom följande fyra teman: att familjerelationerna förändras, att leva med ökad oro och rädsla, att familjens levnadsvanor förändras samt att leva med ökat ansvar. Resultatet visade att hela familjen påverkas när ett barn i familjen insjuknar i diabetes typ 1. Inledningsvis upplever familjen en jobbig period då de måste skaffa nya rutiner för att upprätthålla barnets hälsa. När familjen fått mer erfarenhet och kunskap blir de tryggare i situationen. Trots det känner de alltid oro för barnet. Slutsatsen är att sjuksköterskan har en betydelsefull roll för hela familjen och det är viktigt att skilja på familjens och barnets erfarenheter. Det är viktigt att sjuksköterskan har kunskap om familjens erfarenheter för att möta deras behov och anpassa vården utefter det. / Type 1 diabetes is a chronic disease which incidence and prevalence is increasing in Sweden. It is most common that the disease debuts in childhood. The child with type 1 diabetes requires lifelong treatment and therefore the family has to learn how to manage the disease in everyday life. The aim of this study was to describe the family’s lived experiences when a child has type 1 diabetes. The chosen method was a literature review. The study is based on 13 qualitative articles which were found in the databases CINAHL and PubMed. The results showed following four themes: changed family relationships, increased concern and fear, changed living habits and increased responsibility. Initially the family experiences a difficult time and they need to set up new routines to maintain the child’s health. Experiences gain knowledge and leads to security over time. Although the family are always concerned about the child. Therefore the nurse has an important role for the whole family and it is important to distinguish between the family’s experiences and the child’s experiences. It is important that the nurse has the knowledge of the family’s experiences in order to understand their needs and adapt the care.