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

Discontinuation of follow-up care for young people with complex chronic conditions: conceptual definitions and operational components

Background A substantial proportion of young people with Complex Chronic Conditions (CCCs) experience some degree of discontinuation of follow-up care, which is an umbrella term to describe a broken chain of follow-up. Discontinuation of follow-up care is not clearly defined, and the great plethora of terms used within this field cannot go unnoticed. Terms such as “lost to follow-up”, “lapses in care” and “care gaps”, are frequently used in published literature, but differences between terms are unclear. Lack of uniformity greatly affects comparability of study findings. The aims of the present study were to (i) provide a systematic overview of terms and definitions used in literature describing discontinuation of follow-up care in young people with CCC’s; (ii) to clarify operational components of discontinuation of follow-up care (iii); to develop conceptual definitions and suggested terms to be used; and (iv) to perform an expert-based evaluation of terms and conceptual definitions. Methods A systematic literature search performed in PubMed was used to provide an overview of current terms used in literature. Using a modified summative content analysis, operational components were analysed, and conceptual definitions were developed. These conceptual definitions were assessed by an expert panel using a survey. Results In total, 47 terms and definitions were retrieved, and a core set of operational components was identified. Three main types of discontinuation of follow-up care emerged from the analysis and expert evaluation, conceptually defined as follows: Lost to follow-up care: “No visit within a defined time period and within a defined context, and the patient is currently no longer engaged in follow-up care”; Gap in follow-up care: “Exceeded time interval between clinic visits within a defined context, and the patient is currently engaged in follow-up care”; and Untraceability: “Failure to make contact due to lack of contact information”. Conclusion By creating a common vocabulary for discontinuation of follow-up care, the quality of future studies could improve. The conceptual definitions and operational components provide guidance to both researchers and healthcare professionals focusing on discontinuation of follow-up care for young people with CCCs

Implementation fidelity of a transition program for adolescents with congenital heart disease: the STEPSTONES project

Background Although transition programs have been evaluated for adolescents with chronic conditions, these have rarely involved process evaluations. Indeed, outcomes of complex interventions are dependent on how the intervention is implemented in practice and evaluations of implementation process are therefore pivotal. The aim of this study was to evaluate the extent to which a transition program for adolescents with congenital heart disease was delivered as intended. Research questions were 1) to what level of fidelity was the program delivered? and 2) what potential moderating factors affected the delivery of the program and overall fidelity? Methods A mixed methods design was used, where a process evaluation was embedded in the STEPSTONES randomized controlled trial in Sweden. The implementation fidelity framework by Carrol (2007) and Hasson (2010) was used to design, collect and analyze data. Quantitative data consisted of intervention records on adherence and were analyzed with descriptive statistics. Qualitative data on moderators affecting fidelity were collected through interviews, log-books and focus group interviews with healthcare professionals implementing the intervention and participatory observations of the implementation process. Data were analyzed with deductive content analysis. Triangulation was used to integrate quantitative and qualitative data within the fidelity framework. Results Six out of eight components of the transition program were delivered to an extent that adhered to the program theory or achieved a high level of fidelity. However, components involving peer support had a low attendance by the participating sample (32.2%), and the joint transfer meeting was challenging to implement, despite achieving high adherence. Moderators affecting the implementation process were the adolescent’s and healthcare professional’s engagement in the intervention, contextual factors and a lack of standard operating procedures for all components in the program. Conclusion Barriers and facilitators for a future implementation of transition programs have been illuminated in this study. The use of an implementation fidelity framework in the process evaluation proved successful in providing a comprehensive evaluation of factors affecting the implementation process. However, implementation fidelity must be considered in relation to adaptations to the local and personal prerequisites in order to create interventions that can achieve fit

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

Forty years of quality-of-life research in congenital heart disease: Temporal trends in conceptual and methodological rigor

The first study on quality of life (QoL) in patients with congenital heart disease was published 40years ago. Since then, the number of QoL articles on these patients has grown exponentially. We conducted a systematic literature review of all empirical studies on QoL in patients with congenital heart disease published since 1974, with the aim of determining the range of conceptual and methodological rigor of studies and identifying temporal trends in these parameters.publisher: Elsevier articletitle: Forty years of quality-of-life research in congenital heart disease: Temporal trends in conceptual and methodological rigor journaltitle: International Journal of Cardiology articlelink: http://dx.doi.org/10.1016/j.ijcard.2015.05.070 content_type: article copyright: Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.status: publishe