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

Screening for Hypertrophic Cardiomyopathy in Asymptomatic Children and Adolescents. Psychosocial consequences and impact on quality of life and physical activity.

The aim of this thesis was to describe the consequences of being diagnosed with hypertrophic cardiomyopathy (HCM) while being asymptomatic, taking into consideration psychosocial effects and medical aspects of diagnosis and treatment. Methods: Quality of life (QoL) was measured according to Lindström before the diagnosis, and after two years, comparing with healthy controls. Psychosocial consequences of the diagnosis were explored in interviews with children and their parents and analysed using content analysis. Exercise performance was measured at baseline and after one year in patients randomized to no pharmacological treatment or selective or non-selective high-dose beta-blocker therapy. Results: The total QoL score was similar in both groups at baseline and at follow-up. Parents described an immediate reaction of shock, grief and feelings of injustice but were also grateful that their child had been diagnosed and was still asymptomatic. The diagnosis resulted in a change in life-style for most families due mainly to restrictions of sports activities. Parents had difficulties to adapt to the new life but after re-adjustment they regained hope and confidence. The children described an involuntary change of their daily life with limitations and restrictions because of life-style recommendations and this also affected their social context. However, after a reorientation process they felt hope and had faith in the future. There was no significant difference in exercise capacity between the groups at baseline, or after one year of observation versus beta-blocker treatment. Conclusions: Family screening for HCM did not appear to negatively influence QoL. Children diagnosed with HCM through family screening went through an involuntary change of daily life, mainly ascribed to life-style-modifications. They strived to create a life where they could feel secure and have faith in the future, and with the support of parents and health care professionals they achieved a new state of normality. Neither selective nor non-selective beta-blockade caused significant reductions in exercise capacity in patients with HCM above that induced by life-style changes

Adapting forest health assessments to changing perspectives on threats – a case example from Sweden

A revised Swedish forest health assessment system is presented. The assessment system is composed of several interacting components which target information needs for strategic and operational decision making and accommodate a continuously expanding knowledge base. The main motivation for separating information for strategic and operational decision making is that major damage outbreaks are often scattered throughout the landscape. Generally, large-scale inventories (such as national forest inventories) cannot provide adequate information for mitigation measures. In addition to broad monitoring programs that provide time-series information on known damaging agents and their effects, there is also a need for local and regional inventories adapted to specific damage events. While information for decision making is the major focus of the health assessment system, the system also contributes to expanding the knowledge base of forest conditions. For example, the integrated monitoring programs provide a better understanding of ecological processes linked to forest health. The new health assessment system should be able to respond to the need for quick and reliable information and thus will be an important part of the future monitoring of Swedish forests

Annie, a Tool for Integrating Ergonomics in the Design of Car Interiors

An example of a result from a long-term cooperation with\ua0Lund University (together with professor Roland Axelsson at the Department\ua0for Work Environment) there some of the authors. (Engstr\uf6m)\ua0gained extensive\ua0grants (Wallenberg Stifelsen regarding\ua0equipment as well as other founding from e.g. the Swedish Work Environment Found)

ANNIE, a Tool for Integrating Ergonomics in the Design of Car Interiors

An example of a result from a long-term cooperation with\ua0Lund University (together with professor Roland Akselsson at the Department\ua0for Work Environment) there some of the authors (Engstr\uf6m)\ua0gained extensive\ua0grants (Wallenberg Stifelsen regarding\ua0equipment as well as other founding from e.g. the Swedish Work Environment Found). In this case the just mentioned EU-financing