The purpose of this qualitative descriptive study was to examine parental experiences and challenges raising children with both T1DM and CD. Twenty-six families, including 30 parents (25 mothers, 4 fathers, and one custodial grandmother), participated in a 30-60 minute audio-recorded interview designed to explore parental experiences raising children with both T1DM and CD. Participants were asked IRB approved open-ended questions about their experiences raising a child with both diseases. Direct quotations best representing categories/sub-categories were identified through selective coding. Analysis revealed seven main themes: Six themes parents are concerned about, including (a) their child's health complications, b) the challenges of daily disease management, c) the time, resources, and expense required to manage both diseases, d) their child's emotional/mental health, e) support from healthcare providers, f) community support/understanding, and lastly (observed by the researcher) g) how positive versus negative experiences and adaptation influence the way parents and children meet their challenges and perceive the future. Parents raising children with both T1DM and CD face many daily challenges as they learn to manage both lifelong chronic diseases. They need access to and support from healthcare providers for up-to-date education, treatment options, and community resources. Positive provider relationships were identified as: being responsive to parent's questions, willing to listen to parents, creating an open and honest dialogue with parents, having a personal relationship with the child, and being a patient advocate. Future research should examine broader ethnic and socioeconomic populations. A quantitative study design could also be used to assess the level of caregiver burden, in order to compare different ethnic and socioeconomic groups.

No description available.

PURPOSE: Effective interventions are needed to help adolescents with T1D develop independent self-management skills to prevent commonly observed deterioration of disease self-management resulting in poor health outcomes. Using a prospective RCT design, we assessed the impact of a nurse-led education program based on motivational interviewing (MI) in youth with Type 1 diabetes (T1D). DESIGN AND METHODS: After parental consent and youth assent, we prospectively randomized 66 adolescents 13-18 years old with T1D to either usual care (every 3 months visit with pediatric endocrinologist) or usual care supplemented by 2 in-person and 4 follow-up phone calls with a nurse educator in a pediatric endocrinology clinic of the University Hospital Farhat Hached, Sousse, Tunisia. We used MI sessions to support youth general and disease specific self-management skills. Outcomes were change, between baseline and 6 months, in TRAQ (a validated measure of youth self-management) scores and HbA1c values. RESULTS: Mean TRAQ scores (based on a 5-point Likert scale) increased by 1.44 points (s.d. = 0.56) in the Intervention Group versus 0.26 points (s.d. = 0.34) in the control group (p < 0.001). The mean HbA1C value decreased in the intervention group by 0.95 units versus a decrease of 0.12 units in the control group (p = 0.047). CONCLUSION: We found that a brief, nurse-led MI-based educational intervention, integrated into specialty pediatric care, resulted in a significant improvement in both self-reported self-management skills and in HbA1c values. TRIAL REGISTRATION: Registered in ClinicalTrials.gov Identifier: NCT04798937.

Bakgrund: Typ 1-diabetes är en kronisk autoimmunsjukdom som ofta drabbar barn, där kroppens egen insulinproduktion är delvis eller helt nedsatt. I Sverige insjuknade 979 barn med typ 1-diabetes år 2021 och insjuknandet ökar för varje år. Insjuknandet sker snabbt och vägen till diagnos kan se olika ut. När ett barn insjuknar drabbar det även föräldrar som ofta är närvarande och delaktiga i sitt barns vård. Syfte: Att beskriva föräldrars upplevelse i samband med sitt barns typ 1-diabetesdiagnos. Metod: Denna beskrivande litteraturstudie har baserats på tolv studier med kvalitativ ansats och sammanställts enligt Aveyards tematiska analys. Huvudresultat: Utifrån syftet identifierades fyra teman: Känslor relaterat till diagnos, Relationer till sjukvårdspersonalen, Information och utbildning på sjukhuset, Ökat ansvar i föräldraskapet. Majoriteten av föräldrar upplevde chock vid diagnos, andra känslor som framkom var sorg över förlusten av sitt barns hälsa och att bristande kunskaper om sjukdomen kunde ge skuldkänslor. Föräldrarnas upplevelse av sjukvården skiljde sig åt, där vissa föräldrar beskriver vårdtiden som trygg medan andra upplevde brist på stöd och empati från vårdpersonal. Utbildningen om diabetes upplevdes olika, dock framkom det att flertalet föräldrar kände en informationsöverbelastning. Under tidsperioden på sjukhuset beskriver föräldrar ett förändrat ansvar i deras roll som förälder. Slutsats: Om vårdpersonal bistår föräldrarna med individanpassad information, är närvarande och ger stöttning kan det skapa förutsättningar som kan bidra till att föräldrarna lättare kan förstå och hantera sjukdomen. / Background: Type 1-diabetes is a chronic autoimmune disease that often affects children, where the body's own insulin production is partially or completely impaired. In the year 2021, 979 children were diagnosed with type 1-diabetes in Sweden, and the incidence increases every year. The disease occurs quickly and the path to diagnosis can look different. When a child falls ill, it also affects parents who are often present and involved in their child's care. Aim: To describe parents' experience in relation to their child's type 1-diabetesdiagnosis. Method: A descriptive literature study based on twelve qualitative studies and was assembled with Aveyards thematic analysis. Main results: Based on the aim four themes were identified: Feelings related to diagnosis, Relations with the healthcare staff, Information and training at the hospital, Increased responsibility in parenthood. The majority of parents experienced shock at diagnosis and other emotions that emerged were sadness at the loss of their child's health, feelings of guilt and also a lack of knowledge about the disease. The parents’ healthcare experience varied, some parents described the time in hospital as safe, while others experienced a lack of support and empathy with healthcare staff. Education about diabetes was experienced differently, however, it appears that the majority of parents felt an overload of information. During the period in the hospital, parents describe a changed responsibility in their role as a parent. Conclusion: If healthcare professionals assist the parents with individually tailored information, are present and provide support, it can create conditions that can contribute to the parents being able to understand and manage the disease more easily.

京都大学 / 新制・課程博士 / 博士(医学) / 甲第24965号 / 医博第5019号 / 新制||医||1069(附属図書館) / 京都大学大学院医学研究科医学専攻 / (主査)教授 川口 義弥, 教授 波多野 悦朗, 教授 中本 裕士 / 学位規則第4条第1項該当 / Doctor of Medical Science / Kyoto University / DFAM

Bakgrund: Diabetes typ 1 är en långvarig sjukdom som oftast uppstår hos barn och ungdomar. Det innebär att bukspottkörteln inte längre kan producera tillräckligt med insulin. Det är inte bara barnet som lider av denna sjukdom utan även föräldrar som får en omställning i sin vardag. Syfte: Syftet var att undersöka föräldrars upplevelser av att leva med barn som har diabetes typ 1. Metod: En litteraturöversikt med tio kvalitativa artiklar hämtade från databaserna PubMed och CINAHL complete som analyserats utifrån Fribergs analysmetod. Resultat: Tre teman framkom i resultatet: 1). oro hos föräldrar 2). förändrade familjerelationer och 3). ökat ansvar. Resultatet beskriver föräldrars upplevelser och känslor kring barnets egenvård, samt det ansvar som tillkommer vid behandling av diabetes typ 1. Oron som finns kring komplikationer och hur detta kan påverka det psykiska måendet. Slutsats: Resultat visar hur föräldrar påverkas av att ha ett barn med diabetes typ 1 och stöd från vårdpersonal var en viktig faktor i föräldrarnas vardag. Sjuksköterskan har en betydelsefull roll genom att skapa förståelse och empati till den drabbade familjen. Detta kan skapa minskat lidande och en bättre bearbetning kring vård och behandling av diabetes typ 1. / Background: Type 1 diabetes is a long-term disease that most often occurs in children and adolescents. This means that the pancreas can no longer produce enough insulin. It is not only the children who suffer from this disease but also the parents who get a change in their everyday lives. Aim: The purpose was to investigate parents' experiences of living with children with type 1 diabetes. Method: A literature review with ten qualitative articles taken from the databases PubMed and CINAHL complete, which have been analyzed based on Friberg’s analysis method. Results: Three themes emerged in the result: 1). anxiety of parents 2). changing family relationships and 3). increased responsibility. The results describe parents' experiences and feelings about the child's self-care, as well as the responsibility that arises in the treatment of type 1 diabetes. The concern that exists about complications and how this can affect the mental health. Conclusion: The results show how parents are affected by having a child with type 1 diabetes and that support from healthcare professionals was an important factor in their parents' everyday lives. Therefore, the nurse has a significant role in creating understanding and empathy for the affected family. This can create reduced suffering and a better processing around care and treatment of type 1 diabetes.

Bakgrund: Förekomsten av diabetes typ 1 ökar världen över. Den största ökningen kan ses hos barn och ungdomar. Diabetes typ 1 är ett kroniskt tillstånd där insulinbehandling krävs livet ut. Egenvård är en viktig aspekt i behandlingen och inkluderar bland annat regelbundna blodsockermätningar och insulinadministrering. Sjuksköterskan har en betydande roll i att stödja ungdomar vid egenvård. Syfte: Att beskriva ungdomars erfarenheter av egenvård vid diabetes typ 1. Metod: Litteraturstudien har baserats på tio vetenskapliga artiklar med kvalitativ ansats som analyserats med kvalitativ innehållsanalys. Resultat: Två kategorier och sex subkategorier framkom i resultatet. Första kategorin var “Utmaningar”. Subkategorierna var “Att uppleva ett ökat ansvar”, “Att möta svårigheter i skolan” och “Att uppleva motgångar i vardagen”. Den andra kategorin som identifierades var “Omgivningens påverkan” med underkategorierna: “Att få stöd och ifrågasättande från familjen”, Att få stöd från vårdpersonalen” samt “Att uppleva vänners medkänsla”. Slutsats: Egenvård för ungdomar med diabetes typ 1 är en central och komplex del i livet. Under ungdomsåren tar ungdomar med diabetes typ 1 mer eget ansvar över egenvården och föräldrarna blir mindre involverade. Stöd från omgivningen ses dock fortfarande som en viktig del i egenvårdshanteringen. / Background: The occurrence of diabetes type 1 is increasing worldwide. The largest increase can be seen in children and adolescents. Diabetes is a chronic condition that requires lifelong insulin treatment. Self-care is an important aspect of treatment and includes regular blood glucose measurements and insulin administration. The nurse has a significant role in supporting adolescents in self-care. Purpose: To describe adolescents' experiences of self-care in type 1 diabetes. Method: The literature review is based on ten scientific articles with a qualitative approach that were analyzed using qualitative content analysis. Result: Two categories and six subcategories emerged from the results. The first category was “Challenges”. The subcategories were “To experience increased responsibility”, “To face difficulties at school” and “To experience adversity in everyday life”. The second category identified was “Influence of the surroundings” with subcategories: “To be supported and questioned by the family”, “To receive support from health professionals” and “To experience friends' compassion”. Conclusions: Self-care for adolescents with type 1 diabetes is a central and complex part of life. Adolescents with type 1 diabetes take more responsibility with self-care and parents become less involved. However, support from the people around adolescents is still an important part of self-care management.

Background People with type 1 diabetes make up approximately two million of the American population. Every day, these two million people struggle to fight this lifelong, sometimes life threatening disease. While type 1 diabetes currently has no cure, there are technologies that can make diabetes management more effective. This study surveyed the type 1 diabetes (T1D) young adult population aged 18-30, to evaluate what technologies and tools are most often associated with achieving optimal glycemic control (OGC). Methodology The instrument is a 35 question, investigator developed survey that is designed to measure how often a participant utilizes the technology identified in each question, with the response choices ranging from 0 (never) to 5 (multiple times daily). In addition, there were some yes/no and fill-in-the-blank questions to identify demographic variables. The technology topics that were explored are 1) mode of insulin therapy, 2) mode of blood glucose monitoring therapy, 3) mode of communication with designated care provider, 4) electronic applications used, 5) demographic variables, and 6) pertinent comorbidities. This information was used to evaluate variables that assist T1Ds in achieving optimal glycemic control. Participants were invited to participate in this study via email using the Students with Diabetes email listserv. The email contained the IRB approved explanation of research letter, which informed participants of the study and the research being conducted. If the student chose to participate, they checked a box that served as an electronic signature, and they continued on to the 35-question survey. All responses to the survey will be kept confidential; as the survey and research did not require any personal identifying information. Data regarding the specific demographics, technologies used for diabetes control, and hemoglobin A1C levels were recorded and analyzed. The results of the survey will be shared with the participants via the same email list-serv by which they were originally recruited. Results There were 59 participants. A total of 21 out of 59 respondents had optimal glycemic control (A1C less than 7.0, per American Diabetes Association guidelines). Eighty eight percent of those with OGC wore their CGMs all the time, while only 66% of those with IGC wore their CGMs all the time. Ninety five percent of those with OGC used their insulin pumps all the time, while 89% of those with IGC did. It is likely that the combination of both CGMs and insulin pumps worn all the time are the most powerful tools to achieving OGC. Students that were employed, enrolled in classes, and still under their parent’s insurance plans had a higher incidence of optimal glycemic control. Discussion It was hypothesized that those with OGC would have a higher incidence of diabetes technology use. This PI found that even though almost all participants had access to the diabetes technology, still only 37% of the participants had optimal glycemic control. There are many components to diabetes care that impact glycemic control that were not explored within this scope of this diabetes technology study. Conclusions It is likely that both CGMs and insulin pumps worn all the time are the most powerful tools to achieving OGC. Students who graduate from college and transition to adulthood are vulnerable as they may encounter added stressors such as employment, and financial responsibility that cause them to deviate from the recommendations for diabetes technology use. Care providers need to be cognizant that young adulthood is a vulnerable time in terms of OGC and optimal diabetes management. Providers need to work with young adults, and encourage them to adhere to the recommended diabetes care regime.

No description available.

No description available.