Living with diabetes during transition to adult life – Relationships, support of self-management, diabetes control and diabetes care

The overall aim of the thesis was to illuminate main concerns related to the transition of adolescents/ emerging adults with Type 1 diabetes to adult life and diabetes care and to gain a deeper understanding of how care providers, patients and their parents handle this situation. In paper I and II, participant observations of visits to physicians, nurses and group sessions (n=51) were conducted in two paediatric (PDC) and two adult (ADC) diabetes clinics as well as interviews with care providers (n=10). Focus was to explore the care culture in the settings and its implications for care of and how care providers handle the transition in relation to adolescent needs. In paper III, 104 emerging adults were followed (18-24 years) through record audit in order to explore glycemic control and its relation to diabetes care utilization. In paper IV, interviews with young adults (n=13) and parents (n=13) were conducted to explore the meaning of interactions with and support of self-management from parents and other significant others. Internet communication between youths with diabetes was also included in the analysis. Qualitative studies (I, II, IV) were analyzed with using a constant comparative method. In paper III, parametric and non-parametric statistical methods were used and a generalized linear mixed model was used for the longitudinal data analyses. This thesis shows that differing care culture in paediatric and adult diabetes care has implications for care providers, emerging adults and their parents’ experiences of caring relationships, and diabetes care. While youths are receiving multidimensional support in paediatric care, they become less visible after transition to adult care due to differences in structural and organisational conditions and strategies. The frequency of visits declined from time in PDC to ADC and females visited ADC more than males. The glycemic control was poor during the whole study period where both males and females exceeded the recommended level. HbA1c levels decreased significantly over time for females but not for males. Findings indicate that more visits in ADC are associated with worse glycemic control. The preparation phase and the transition process were facilitated in the clinic with special transition strategies where logistic problems such as lost referral letters could be prevented. Mutual understanding between care providers can be created in professional meetings which also enables integration of care. The transition to adult life for emerging adults with diabetes was found to be characterized by a relational and reflective process involving reconstruction of supportive relationships with care providers and significant others and a re-consideration of the self. This interactional process implies that an ongoing redefinition of relationships and identity occurs during the transition. In conclusion, the findings reveal that individual trust is hindered by an unsettled relationship to the new care provider and institutional trust by declining accessibility and less continuous care. Interventions at an organizational as well as individual level are required in order to meet the needs of emerging adults with diabetes in a life phase characterized by changing conditions. Patterns of diabetes care utilization are important to take into account and more forums for professional meetings might enable integration of paediatric and adult diabetes care

Handling the transition of adolescents with diabetes: participant observations and interviews with care providers in paediatric and adult diabetes outpatient clinics

PURPOSE: The purpose of this study was to explore how care providers handle the transition process from paediatric to adult diabetes outpatient clinic and to describe their perception of adolescents' needs during this process. METHODS: Participant observations of patient visits to nurses and physicians and 10 semi-structured interviews with care providers in two paediatric and two adult clinics in Sweden were carried out. Data were analysed using the constant comparative method developed in the grounded theory tradition. RESULTS: The integrated framework developed in the analysis consists of subcategories, process categories and a core phenomenon. The preparation phase showed in this study that preparing transition requires modified strategies. The transition phase implied transferring responsibility and changing care relations while the evaluation phase revealed that care providers are creating mutual understanding through appraisal. All categories are related to the generated core phenomenon: enabling integration through professional meetings. The way care providers construct meeting arenas has a crucial impact on the possibility to bridge uncertainty, insufficient knowledge, routines and strategies. CONCLUSIONS: The way participating clinics handle transition greatly influences the process. Professional meetings appeared to be of vital importance to enable the building of bridges between paediatric and adult diabetes care in this study

Struggling and Overcoming Daily Life Barriers Among Children With Congenital Heart Disease and Their Parents in the West Bank, Palestine

Advances in early diagnosis, treatment, and postoperative care have resulted in increased survival rates among children with congenital heart disease (CHD). Research focus has shifted from survival to long-term follow-up, well-being, daily life experiences, and psychosocial consequences. This study explored the everyday experiences of children with CHD and of their parents living in the Palestinian West Bank. Interviews with nine children aged 8 to 18 years with CHD and nine parents were analyzed using content analysis. The overall theme that emerged was facing and managing challenges, consisting of four themes: sociocultural burden and finding comfort, physical and external limitations, self-perception and concerns about not standing out, and limitations in access to health care due to the political situation. To provide optimum care for children with CHD and their parents, health care providers and policy makers must understand the negative consequences associated with sociocultural conditions and beliefs about chronic illness.Acknowledgments We would like to thank all of the participants of this research. It was their willingness to share their experiences and insights that made this study possible. Funding The authors received no financial support for the research, authorship, and/or publication of this article

Societal Norms and Conditions and Their Influence on Daily Life in ChildrenWith Type 1 Diabetes in the West Bank in Palestine

Purpose: To explore the experiences of daily life in children with type 1 diabetes (T1D) and their parents living in the West Bank in Palestine. Design andMethods: A qualitative study using thematic interviewswas performed with 10 childrenwith T1D and their parents (n = 10). Content analysis was performed with the assistance of NVIVO 10. Results: The overall themewas facing the social reality of diabetes. Thiswas underpinned by two themes: stigmatization and social constraints. Facing the social reality of diabetes described children and their parents' everyday life attempts to place themselves within the context of the disease and social context. Children and their parents described how stigmatization and social constraints impacted their daily life as a result of fear of disclosing the disease, which could affect their social status. Conclusion: These findings highlighted how daily life in children with T1D and their parents was highly affected by cultural impacts, especially as stigma related to the illness affected social interactions of female and male children/ adolescents. Lack of knowledge andmisunderstandings about T1D in society lead to negative consequences like poorer management of diabetes, and this becomes mediated by gender. Practical Implications: The findings suggest health care providers need to be aware of the cultural and social impact of T1D on children's and parents' daily life in order to meet their needs and challenges by providing appropriate interventions, strategies and support.This research did not received any specific grant from funding agencies in the public, commercial, or not-for-profit sectors

Self-Perceived Health Status and Sense of Coherence in Children With Type 1 Diabetes in the West Bank, Palestine

Introduction: Self-perceived health status and sense of coherence (SOC) are essential constructs for capturing health outcomes in children with type 1 diabetes (T1D). This study measured self-perceived health status and SOC in children with T1D and compared them with a healthy reference group in West Bank, Palestine. Methodology: One hundred children with T1D aged 8 to 18 years and 300 healthy children completed PedsQL 4.0 Generic Core Scales and SOC-13 in a crosssectional descriptive study. Results: All children reported acceptable self-perceived health status and low degree of SOC. In the diabetes group, high degree of SOC was associated with better self-perceived health status and more optimal metabolic control. Males in the diabetes group reported higher self-perceived health status than females. Discussion: The unstable political situation in Palestine may threaten SOC in children in general. Health professionals can monitor self-perceived health status and SOC to evaluate interventions aiming to improve glycemic control.We gratefully thank all the children for their participation and the nurses who assisted in data collection

Internet Ethics and Education in Japan

The First Conference on Human.Society@Internet(2001年7月4日, Seoul) Internet Ethics and ducaiton in Japan (Invited Talk)のスライ

Internet use, needs and expectations of web-based information and communication in childbearing women with type 1 diabetes

<p>Abstract</p> <p>Background</p> <p>In the childbearing period women use the internet both to seek information and as an important source of communication. For women with type 1 diabetes, pregnancy and early motherhood constitute a more complex situation than for women in general. This implies need for support from various professionals and a way of bridging any discontinuity in care would be to develop a website providing complementary social support and information. The objective of this study was to explore internet use, needs, and expectations regarding web-based information and communication in childbearing women with type 1 diabetes.</p> <p>Methods</p> <p>Data were collected via a web-based survey with an explorative and descriptive design, in which 105 of 139 eligible mothers with type 1 diabetes and recent childbearing experience participated. The data were analyzed with descriptive and analytical statistics, and open answers with a directed content analysis.</p> <p>Results</p> <p>Of the 105 women, 22% never used the internet to search for information concerning pregnancy, childbirth, and parenthood. 12% searched for information every day, 29% one or more times a week, and 38% one or more times a month. Of the women 44% declared themselves to be passive participants on social websites, and 45% to be active participants. 45% had specific expectations of web-based support directed towards childbearing, especially those with higher educational level (<it>P </it>= .01). Expectations of instrumental and informational support included an expert-controlled website with reliable, updated, and information focused on childbearing and diabetes, improved access to diabetes care professionals and alternative ways to communicate and to receive childbearing-related support. The women also asked for online technical devices to manage the frequent monitoring of blood glucose during pregnancy. Informal, emotional, and appraisal support from women in similar situations was suggested as a way to provide an arena for belonging instead of creating feelings of alienation.</p> <p>Conclusions</p> <p>Our results add important knowledge about the web-based needs of women with type 1 diabetes in relation to childbearing. This user directed study indicates specific areas of development for the provision of effective web-based support that includes facilities for reliable information, interactive support and social networking in this population.</p