scholarly journals “I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood

2021 ◽  
Vol 8 ◽  
pp. 237437352110607
Author(s):  
Iyar Mazar ◽  
Sara M. Moorman

vFor youth with life-limiting chronic illnesses, transitioning to adulthood in line with age-norms may be difficult due to symptom severity and shortened survival. This study explores whether individuals with Barth syndrome (BTHS), a condition uniquely characterized by extreme prognostic uncertainty, experience similar or different challenges compared to youth with other conditions. During focus groups with adults with BTHS ( n = 12) and caregivers ( n = 13), participants reported that the ability to independently manage one’s health condition, the social/emotional impacts of BTHS, and the ability to set goals in the context of future uncertainty challenge their transition to adulthood. This aligns with prior research, indicating that prognostic uncertainty may hinder long-term goal setting in BTHS. Implications of these findings include providing strategies for identifying meaningful alternative goals for individuals with chronic illnesses to target, promoting increased autonomy earlier in youth, and fostering coping strategies to manage non-disease related impacts.

2021 ◽  
Vol 68 (2) ◽  
pp. 157-161
Author(s):  
Anca A. Simionescu ◽  
◽  
Andreea Hetea ◽  
Maria Ghita ◽  
Ana Maria Alexandra Stanescu ◽  
...  

Postpartum depression remains a significant healthcare priority due to the social and family consequences. Research has shown that both mothers and fathers experience significant psychological changes during pregnancy and postnatally, including depressive disorders. Underdiagnosed in most cases, the short and long-term consequences involve infant and child development, family’s life and social disruption. Because this pathology may lead to deviation from behavioural and social norms, we want to emphasize that timely and appropriate diagnostic can improve the effectiveness of treatments and avoid complications.This may contribute to optimal social, emotional and behavioural child development that may occur consecutively to family members” emotional and psychological manifestations.


Author(s):  
Elżbieta Jabłońska

The text attempts to provide a comprehensive overview of the most important events and factors which have influenced the establishment of democracy in the Kingdom of Bhutan. On March 2008, Bhutan officially transformed from absolute monarchy to a modern constitutional monarchy by the successful conduct of its first parliamentary elections and the promulgation of the Constitution. Fourth King of Bhutan, His Majesty Jigme Singhye Wangchuck (referred to as “the father of democratic Bhutan”), finalized a long -term vision of democratization and decentralization by giving executive power to the Council of Ministers (Lhengye Zhungtshog). Both the moral foundation, the idea of Gross National Happiness (GNH)  and enlightened monarchy has been the factor that determines and organizes the social and political life in Bhutan. GNH assumes that the real development is possible only when there is a balance between economic, social, emotional, spiritual and cultural needs. The Bhutan’s way to democracy is undoubtedly successful and the hard political work which has been ongoing for years, is still evolving.


2020 ◽  
pp. 54-60
Author(s):  
Olga N. Machekhina

The COVID-19 pandemic has forced the global school system to face an unusual set of circumstances. As the pandemic threat grew, schools around the world were closed throughout March 2020 to prevent the virus from spreading. Although school closures have been announced as a temporary measure, prolonged closures could cause significant disruption to the education ecosystem, affecting an estimated 1.5 billion students in 165 countries. It is now clear that this situation will have a lasting impact on the social, emotional and mental health of children and adolescents, as well as on overall learning outcomes, which may widen the gap between children from well-off and disadvantaged families. The use of alternative channels for delivering learning information to which not everyone still has access will further widen the gap. The pandemic has forced the education system to focus on developing health and safety requirements and conditions, in the new environment, rapid and flexible responses and solutions to minimize the impact on learning in the short and long term. All of this responds to the challenges of the pandemic, which we will explore in more detail in the text below.


2019 ◽  
Vol 8 (1) ◽  
pp. 15-25
Author(s):  
Toma Claudia-Andreea ◽  
Cristina Burlacioiu

Abstract The mortality rate is a global indicator that reflects the standard of living and the population health condition, but also a variable that shows the social-economic development of a society. This paper proposes the investigation of some economic conditions and their influence on mortality by literature reviewing and also through a statistic analysis based on 28 European Union countries. In order to study the tendencies of this phenomenon, it was analyzed the influence of some economic factors like the GDP per capita, income discrepancies, inflation rate, budget deficit and also the “snowball” effect for 16 years (from 2000 to 2016) using a panel regression model with fixed effects. The resulted regression model captures the major changes on a long term of mortality rate trend for the population aged 15 and 65 years.


Author(s):  
LENCHUK ELENA B. ◽  

The article discusses the importance of improving the goal-setting process for solving strategic problems of national development, first of all, for the transition to a new model of economic growth based on structural transformations, innovations and new technologies, determines the place of the long-term state strategy of the social and economic development as a base component in this process. The restrictive nature of the targets for sustainable national development identified in the framework of national projects is substantiated. Particular attention is focused on the need for their integration national projects into the strategic planning system and ensure their interconnection with existing strategies and government programs.


Author(s):  
Kadiann Hewitt-Thompson ◽  
Donnette Wright

This paper sought to discuss how children in developing countries are coping with the social, emotional and financial impact of the COVID-19 pandemic on their daily lives. Additionally, the evidence presented will increase awareness that children also experience varying impact of COVID-19 and provide guidance about coping mechanisms that may change the course of the impact and limit long term effects of the pandemic on them. It also explored the psychosocial influence of social determinants of children living in a developing country, the impact on their academic continuity and the role of parents in supporting children. Finally, the paper proposes pragmatic recommendations for achieving optimal social outcomes for children who experience pandemics.


2019 ◽  
Vol 42 ◽  
Author(s):  
Peter C. Mundy

Abstract The stereotype of people with autism as unresponsive or uninterested in other people was prominent in the 1980s. However, this view of autism has steadily given way to recognition of important individual differences in the social-emotional development of affected people and a more precise understanding of the possible role social motivation has in their early development.


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