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Aim – This study aimed to describe the perceptions of being grandparents of a grandchild living with type 1 diabetes.

Introduction – When a child develops a lifelong condition, it affects the whole family, and caring for a child with chronic illness can be stressful. This ongoing stress can impact family relationships. In addition to parents, siblings and grandparents are often among the first to learn about the child's condition and may be the initial source of support.

Methods – Individual interviews were conducted with 11 grandparents from northern Sweden who met the inclusion criteria of having a grandchild with type 1 diabetes. The data were analyzed using qualitative content analysis.

Results – The analysis of the interviews uncovered one main theme: being the lighthouse that lights up dark paths but still needing attention to keep shining. Two themes emerged: facing and managing the unknown and balancing expectations and personal needs. Each theme included three subthemes: understanding an emotionally overwhelming situation, taking on new responsibilities and pushing boundaries, and using but not fully trusting self-management technologies. Other aspects included handling a growing pile of concerns, trying to keep the family united, and maintaining personal activities.

Conclusion – Grandparents play an essential role in families with children who have type 1 diabetes. They assume significant responsibilities by learning self-management technologies and providing emotional and practical support, which are vital for family stability and the child's well-being. However, this role presents challenges, such as fears of making mistakes in diabetes management and worries about their child's and grandchild's struggles. Despite these challenges, many grandparents show resilience and are eager to support their families. They remain actively involved, primarily relying on informal support and information from their children, partners, or patient organizations.

Background: Type 1 diabetes (T1D) is a lifelong disease. Handling self-management, adapting to self-care behaviours, and dealing with illness integration are reported as complex. In Sweden, the T1D patients are transferred from paediatric to adult diabetes care based on their age. In emerging adulthood, i.e. age 18–29, treatment outcomes are commonly sub-optimal, with decreased well-being. Emotional and existential aspects have a major impact, particularly in emerging adulthood due to the multiple concurrent transitions. The transfer is at the age of 18 in Sweden, and is commonly experienced as abrupt. Diabetes specialist nurses (DSNs) are described as having central support roles in this process. Parental support is valuable to maintain and sustain well-being; however, when EAs living with T1D move from paediatric to adult care, their parents are no longer automatically involved in the care. The literature on the transfer focuses mainly on preparations undertaken within paediatric care, with less consideration of the adult care perspective. The overall aim of this thesis was to highlight experiences and advocate for improved support for emerging adults living with T1D and their parents after the transfer to adult care.

Method: A total sample of 53 participants: EAs living with T1D (Study I), parents (Study II), and DSNs (Study III) was recruited via convenience and purposive sampling. The data collection began in the spring of 2021 and ended in the autumn of 2024. Both individual interviews (Studies I–III) and focus-group discussions with all three stakeholder groups (Study IV) were conducted, mainly digitally. Qualitative content analysis was used to analyse the data in Studies I-III. Constructivist grounded theory was used in Study IV. Additionally, I conducted a secondary analysis of all of the results that was inspired by qualitative content analysis.

Result: Overall, the emotional and existential aspects of living with T1D during emerging adulthood are not sufficiently included in the support provided to EAs and parents after the transfer from paediatric to adult care. EAs living with T1D (Study I) were dreaming of being nurtured towards self-reliance. They struggled to find balance in their daily lives, dealt with feelings of being different, wanted to be supported to gradually achieve independence, and wanted to be treated as unique people in healthcare. The parents (Study II) struggled to accept the loss of control and slowly loosening the ties of the close parent–child relationship. They relinquished the priorities of supervision, cherished their relationships, and progressed that EAs “flown the nest”. They also felt abruptly cut off after the transfer. The DSNs (Study III) had ambitions to optimise individual support but with hands tied by structural barriers. They concentrated on the individual and the caring relation and emphasised long-term objectives in self-management support while they struggled to provide accessible care. The “Transition-friendly transfer to adult care model” (Study IV), provided with a gathered understanding of support, highlighted a fundamental need to integrate transition aspects into the transfer process, and to do so using four key properties: flexible and person-centred care; emotional and existential attention; uniform and comprehensible organisation; and accessible everyday communication. The results are discussed in relation to the theoretical frameworks of transition theory, as developed by Meleis, and reconciliation based on the work of Eriksson and Gustafsson.

Conclusion: My thesis contributes with a synthesis of the results of the four previous papers, i.e. the support guidance Transition-friendly support after the transfer to adult diabetes care. This provides comprehensible and bridge-building care structures, assisted development of independence, a flexible and person-centred approach, and attention to reconciliation and existential processing. A transferrelated Swedish clinical decision support tool for transitional care was introduced in 2025, but the results of this thesis suggest that reconciliation and existential aspects are important during multiple transitions in emerging adulthood, and further emphasise how crucial support after the transfer is. DSNs are recommended to highlight reconciliation processes in T1D to support and guide EAs living with T1D and their parents so that they can reconcile with the consequences of the disease, particularly during transitions and transfer. During emerging adulthood, support that addresses personal strengths and that creates hope for the future is concluded as equally important to support in personal vulnerabilities. Organisational shifts towards more accessible and flexible care are suggested as being crucial to providing targeted support. Professional development for DSNs is suggested, particularly as regards emerging adulthood, developmental psychology, and reconciliation processes in T1D.

Bakgrund: Typ 1 diabetes är en komplex och multidimensionell livslång sjukdom som kräver egenvård och beteendeanpassningar när sjukdomen behöver integreras i alla delar av livet. Under det unga vuxenlivet (”emerging adulthood”), 19–29 års åldern, är det vanligt förekommande med sämre välmående och icke-optimala behandlingsresultat. Känslomässiga och existentiella aspekter spelar stor roll, speciellt under unga vuxenlivet då många olika och stora övergångar/livsförändringar sker samtidigt. I Sverige sker överföringen från barn- till vuxendiabetesmottagning vid 18 års ålder och överföringen upplevs ofta som abrupt. Diabetessjuksköterskor beskrivs ofta ha en viktig stödjande roll i diabetesteamet. Stöd från föräldrar är också viktigt för unga vuxna för att säkerställa välmående, men på grund av skillnader mellan barn- och vuxensjukvård är föräldrarna inte längre självklart inkluderade i på vuxenmottagningen. Tidigare forskning gällande överföringen har till största del sin bas i barnsjukvården och fokuserar på förberedelser. Vi vet inte lika mycket om stöd efter överföringen, från ett vuxensjukvårdsperspektiv. Det övergripande syftet med denna avhandling var att belysa upplevelser för att förbättra och stärka stödet som erbjuds under unga vuxenlivet efter överföringen till vuxenmottagningen för unga som lever med typ 1 diabetes samt deras föräldrar.

Metod: Totalt 53 deltagare, unga vuxna som lever med typ 1 diabetes (Studie I), föräldrar (Studie II) och diabetessjuksköterskor från vuxensjukvård (Studie III) samt alla tre samlade perspektiv tillsammans (Studie IV) rekryterades genom tillgänglighet- och ändamålsenligt urval. Datainsamlingen startade under våren 2021 och avslutades under hösten 2024. Vi genomförde både individuella semistrukturerade intervjuer (i Studierna I–III) och fokusgruppdiskussioner med flera perspektiv (i Studie IV) främst digitalt. Analysmetoderna som användes var kvalitativ innehållsanalys (i Studierna I–III) och konstruktivistisk grounded theory (i Studie IV). Jag genomförde även en sekundäranalys (en syntes) av alla resultat inspirerad av kvalitativ innehållsanalys.

Resultat: Sammanfattningsvis, emotionella och existentiella aspekter av att leva med typ 1 diabetes under det unga vuxenlivet behöver stärkas i stödet som ges till unga vuxna och deras föräldrar efter överföringen från barn- till vuxenmottagning. Unga vuxna som lever med typ 1 diabetes, i Studie I, drömde om att bli stärkta mot ökad självtillit. De kämpade med att hitta en balans i vardagslivet, kände sig annorlunda jämfört med andra, stöttades i en gradvis självständighetsprocess och de önskade att bli bemötta som unika personer i diabetesvården. Föräldrar, i Studie II, kämpade för att acceptera kontrollförlust och sakta lossa banden i den hårt knutna barn-föräldrarelationen. De släppte på övervakning, värdesatte relationerna till sina vuxna barn, hanterade att de unga lämnade boet, men kände sig plötsligt avklippta från diabetesvården efter överföringen. Diabetessjuksköterskor, i Studie III, hade ambitioner att optimera det individuella stödet men med händerna bakbundna av strukturella barriärer. De fokuserade trots detta på individen och vårdrelationen samt förespråkade stöd med långsiktiga egenvårdsmål, samtidigt som de hanterade hinder för att ge tillgänglig diabetesvård. Modellen ”(Transitions-/ eller) Övergångsvänlig överföring till vuxensjukvård” (Studie IV) belyste ett grundläggande behov att integrera övergångsaspekter i överföringsprocessen inom ramen för fyra huvuddelar: flexibel och personcentrerad vård, uppmärksamhet kring känslomässiga och existentiella aspekter, en enhetlig och begriplig organisation och tillgänglig vardagskommunikation. Resultaten diskuterades i relation till transitionsteori utvecklad av Meleis och försoning enligt Eriksson och Gustafsson.

Slutsats: Syntesen av alla studier resulterade i rådgivningsstödet ”Övergångsvänligt stöd vid överföring till vuxendiabetesmottagning”. I rådgivningsstödet rekommenderas att diabetesvården erbjuder begripliga och brobyggande vårdstrukturer, ger guidning i utvecklingen av självständighet, erbjuder ett flexibelt och personcentrerat bemötande med fokus på försoning och existentiella aspekter under processen. År 2025 publicerades ett kliniskt kunskapsstöd gällande transitionsvård för unga personer som lever med typ 1 diabetes. Med avstamp från min avhandling, skulle detta kunskapsstöd kunna utökas med starkare implikationer gällande försoning och existentiella aspekter som är betydelsefulla under unga vuxenlivet och efter överföringen med hänsyn till att det sker många övergångar i livet samtidigt. Diabetessjuksköterskor rekommenderas belysa försoningsprocesser och stödja och guida personer som lever med typ 1 diabetes samt deras föräldrar att försonas med sjukdomens konsekvenser särskilt i samband med övergångar efter överföringen. Under unga vuxenlivet är det viktigt att också stödja styrkor och framtidstro, likaväl som stöd gällande sårbarheter. Organisatoriska förändringar behövs för att erbjuda mer tillgänglig och flexibel diabetesvård och säkerställa individuellt och riktat stöd. Professionell utveckling för diabetessjuksköterskor, gällande exempelvis ökad kunskap om unga vuxna och utvecklingspsykologi samt försoningsprocesser i samband med typ 1 diabetes föreslås.

Aim: To describe experiences of being a parent of a child with type 1 diabetes during adolescence and emerging adulthood, including during the transfer from paediatric to adult care.

Design: A qualitative approach was used.

Methods: Individual interviews started in February 2022 and continued to February 2023. Fourteen parents of emerging adults participated. Data were analysed using qualitative content analysis.

Findings: Being a parent of a child with type 1 diabetes involved struggling to accept the loss of control and slowly loosening the ties in the close parent–child relationship during adolescence and emerging adulthood. Parents were gradually reconciling with the illness that was turning the world upside down, making efforts to become a close-knit family team, relinquishing the priorities of supervision and instead cherishing the relationship, processing that the emerging adult is flying the nest and feeling abruptly cut off by healthcare during the transfer to adult care.

Conclusion: The findings were interpreted as outlining a transitional process among parents that started in the onset period, continuing throughout the life span to their children's emerging adulthood. Parents also transition into new roles along with their children. Parents' experiences of complex daily life, multiple transitions and the abrupt transfer from paediatric to adult care are important to acknowledge.

Clinical Implications for the Profession: Transfer is suggested to be carried out with consideration for the individuals' prerequisites and desires. Parents are important stakeholders guiding the transfer. In adult care, a more family-centred approach could help parents cope with new challenges in joint clinical visits. Parents should be welcomed to joint clinical visits in adult care with consent and parents could benefit from being offered support from nurses independently.

Reporting Method: The study adhered to EQUATOR guidelines and the COREQ checklist for qualitative studies was used as the reporting method.

Patient or Public Contribution: No patient or public contribution.

Aim: To explore and describe the experiences of Swedish diabetes specialist nurses in supporting emerging adults with type 1 diabetes mellitus after the transfer from paediatric to adult care.

Background: The transfer from paediatric to adult care for emerging adults living with type 1 diabetes mellitus is a critical period that can impact their well-being and long-term health outcomes. Diabetes specialist nurses play a crucial role in supporting these individuals during the transitions in emerging adulthood. However, their experiences and challenges in providing optimal support have not been extensively studied.

Method: We used a qualitative descriptive design. Ten diabetes nurse specialists from six different Swedish hospitals participated in recorded individual interviews by video link or face-to-face using a semistructured interview guide. Data collection spanned from May to December 2023, and the data were analysed with qualitative content analysis. Informed consent was obtained.

Results: The main theme of the results was ambition to optimise individual support but with hands tied by structural barriers with three additional themes concentrating on the individual and the relationship, emphasising long-term objectives in self-management support, and struggling with obstacles to providing accessible care. The results indicate that while diabetes specialist nurses focus on building strong relationships and emphasise long-term goals in self-management support, they encounter significant obstacles when providing accessible care after the transfer to adult care.

Conclusion: Diabetes specialist nurses highlighted a need for education and training that extends beyond simply managing the medical condition, considering various life transitions and psychosocial challenges. The findings indicate that future standards for supportive interventions should prioritise existential and psychosocial factors. There is a lack of systematic national consensus on collaboration, as the diabetes specialist nurses reported differing experiences regarding transfers and continuity of care.

Introduction: Young adults living with type 1 diabetes face unique challenges as they transition to greater independence, balancing diabetes management in all other dimensions of life. In Sweden, the transfer from pediatric to adult diabetes care at the age of 18 adds to these challenges. This study aimed to translate and evaluate the Swedish version of the T1DAL (Type 1 Diabetes and Life) self-report questionnaire for young adults living with type 1 diabetes.

Method and Materials: The T1DAL questionnaire was translated into Swedish and was completed by 191 young adults aged 18–25 who were registered at a diabetes clinic in three Swedish hospitals. An expert group tested content validity. To determine the number of underlying factors, a parallel analysis (PA) was conducted. The questionnaire’s latent structure was further examined through exploratory factor analysis, in which the items were constrained to a four-factor solution as recommended and found in the original version.

Results: The content validity index of the total score was 0.94. The response distribution analysis revealed the presence of floor or ceiling effects. An EFA with a four-factor solution was conducted, yielding a Model Fit Measure with a χ² of 326.68 and df = 249, resulting in a cmin/df of 1.31, an RMSEA of 0.04, and a TLI of 0.92. Internal consistency was assessed for the subscales suggested by the factor structure, based on the items that loaded onto each factor. Cronbach’s alpha values ranged from 0.75 to 0.89, indicating acceptable to high internal consistency. The four-factor solution explained 45.04% of the total variance.

Conclusion: The Swedish T1DAL questionnaire showed good factorial validity and reliability. The Swedish version requires further testing with potential item reduction; however, it is still expected to be valuable in assessing health-related quality of life among young adults living with type 1 diabetes.

Clinical implications: The Swedish T1DAL questionnaire, particularly its domains related to emotional experiences, managing diabetes effectively, and peer relationships outlines the characteristics of young adulthood and can be used to empower the target group, and is expected to be feasible to implement in clinical practice.

Background: Parents of children with type 1 diabetes play a key role in managing their child’s self-management, which can be stressful and burdensome. High involvement can lead to reactions such as emotional, cognitive, and physical exhaustion in parents. Understanding parents’ psychosocial impact due to their child’s disease is crucial for the family’s overall well-being. The purpose of this study was to describe stress and burden experienced by parents in families with children living with type 1 diabetes.

Methods: This study utilized a qualitative approach, analyzing interviews with 16 parents of children aged 10 to 17 years living with T1D through qualitative content analysis. The data collection occurred between January and February 2025.

Results: Managing a child’s Type 1 diabetes can be tough on family relationships, affecting how partners interact, intimacy, and sibling relationships. The constant stress and worry might leave parents feeling exhausted, unable to sleep, and struggling to think clearly, on top of the pain of losing a normal everyday life. The delicate balance between allowing a child with type 1 diabetes to be independent and maintaining control over their self-management renders these challenges even more demanding for the parents.

Conclusions: Parents’ experiences highlight the need for robust support systems, including dependable school environments, trustworthy technical devices, reliable family and friends, and accessible healthcare guidance. These elements are essential not only for the child’s health and well-being but also for alleviating the emotional and practical burdens parents face.

Aim: To explore young adults' experiences of living with type 1 diabetes in the transition to adulthood, including experiences of the transfer from paediatric to adult care.

Design: A qualitative approach was used.

Method: Ten young adults, six women and four men, aged 19–29 years, participated. Participants were recruited at their regular diabetes clinic from spring 2021 to spring 2022. Semi-structured interviews were transcribed and analysed using qualitative content analysis.

Findings: Dreaming of being nurtured towards self-reliance was the overarching theme. Personal experiences of the transition to adulthood, including the transfer from paediatric to adult care, were described in terms of struggling to find balance in daily life, dealing with feelings of being different, being gradually supported to achieve independence, and wishing to be approached as a unique person in healthcare.

Conclusion: In healthcare, it is important to emphasize not only diabetes-related factors but also emotional and psychosocial aspects of life connected to the transition to adulthood, including the transfer to adult care. The young adults wished to be seen as unique persons in healthcare during their emerging adulthood and should therefore be supported to achieve self-reliance through personal preparations for new challenges and for the consequences of transitioning to adulthood. Specialist nurses can provide appropriate knowledge and leadership.

Implications for the Profession: These findings can guide nurse specialists in support for emerging adults to achieve self-reliance and indicate the importance of person-centred care when experiencing transition and transfer.

Reporting Method: The study adhered to EQUATOR guidelines, and the COREQ checklist for qualitative studies was used as the reporting method.