scholarly journals Understanding the life experience of Barth syndrome from the perspective of adults: a qualitative one-on-one interview study

2019 ◽  
Vol 14 (1) ◽  
Author(s):  
Iyar Mazar ◽  
Jonathan Stokes ◽  
Sarah Ollis ◽  
Emily Love ◽  
Ashlee Espensen ◽  
...  
Keyword(s):  
Life Experience ◽  
Genetic Disorder ◽  
Qualitative Interviews ◽  
Leisure Activities ◽  
Barth Syndrome ◽  
Future Research ◽  
Adult Males ◽  
Role Functioning ◽  
Life Threatening ◽  
Over Time

Abstract Background Barth syndrome (BTHS, OMIM 302060) is a rare, life-threatening, x-linked genetic disorder that occurs almost exclusively in males and is characterized by cardiomyopathy, neutropenia, skeletal muscle myopathy primarily affecting larger muscles, and shorter stature in youth. A greater number of individuals with BTHS are now surviving into adulthood due to advancements in diagnosis and disease management. Given these improvements in life expectancy, understanding the disease experience over time has become increasingly important to individuals with the condition, treatment developers, and regulatory agencies. A study was conducted to explore the experience of BTHS from the perspective of adult males at least 35 years of age with the condition via in-depth qualitative interviews. Results Findings showed that adults with BTHS experienced a variety of signs/symptoms with variable onset and severity throughout their lives, the most frequently reported being the symptoms of tiredness, muscle weakness, and a fast and/or irregular heart rate, and the sign of short stature in youth. These signs/symptoms negatively impacted individuals’ emotional, physical, social, and role functioning. Tiredness and weakness impacted some individuals’ physical functioning from an early age and into adulthood. These symptoms generally worsened over time, increasingly interfering with individuals’ ability to fully participate in paid and unpaid labor and to partake in family and leisure activities. Conclusions This research complements recent studies characterizing the potentially degenerative and progressive nature of BTHS and can encourage future research into the natural history and progression of BTHS in untreated individuals. Participants’ interview responses revealed a range of symptoms and the potential for multiple impacts on individuals’ physical, social, emotional, and role functioning as a result of BTHS symptoms, yet also revealed variability in severity of experience as well as the possibility of resilience and adaptation to the condition.

scholarly journals Not All Syrian Doctors Become Taxi Drivers: Stagnation and Continuity Among Highly Educated Syrians in Norway

2019 ◽  
Author(s):  
Susanne Bygnes
Keyword(s):  
Qualitative Interviews ◽  
Forced Migration ◽  
Future Research ◽  
Taxi Drivers ◽  
Highly Educated ◽  
Syrian Crisis ◽  
Physical Mobility ◽  
Counter Narrative ◽  
Important Form ◽  
Over Time

AbstractMany studies of forced migration have documented processes of deskilling and falls in status resulting from an inability to convert capital from one context to another. This article relies on qualitative interviews with highly educated individuals who arrived in Norway in the wake of the Syrian crisis. In the material, narratives of stagnation, loss and struggle against bureaucracy are highly salient and persist over time. I coin the term mobility dissonance to describe this post-migration stressor—the dissonance between physical mobility across borders and a sense of (not) going anywhere in life. By following some informants over time, this study indicates how classed resources can also represent an element of continuity through the critical life course events that forced migration entails. Descriptions of mobility dissonance are thus part of a more nuanced picture. While hopelessness and loss are very salient in the interviews, following informants over time provides lived examples of how classed resources represent an important form of continuity. Continuity refers to a counter-narrative to the riches-to-rags story often attached to resourceful forced migrants. I suggest future research to pay more attention to classed resources as a potential source of continuity through the migration process.

Understanding employees' information security identities: an interpretive narrative approach

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Jeffrey D. Wall ◽  
Prashant Palvia
Keyword(s):  
Information Security ◽  
Narrative Analysis ◽  
Life Experiences ◽  
Qualitative Interviews ◽  
Situational Factors ◽  
Future Research ◽  
Content Type ◽  
Security Compliance ◽  
And Control ◽  
Over Time

PurposeThe authors seek to understand the formation of control- and security-related identities among organizational employees through and interpretive narrative analysis. The authors also seek to identify how the identities form over time and across contexts. Several identities are identified as well as the changes that may occur in the identities.Design/methodology/approachFew interpretive or critical studies exist in behavioral information security research to represent employee perspectives of power and control. Using qualitative interviews and narrative analysis of the interview transcripts, this paper analyzes the security- and control-related identities and values that employees adopt in organizational settings.FindingsTwo major categories of behavioral security compliance identities were identified: compliant and noncompliant. Specific identities within the compliant category included: faithful follower vs the reasoned follower, and other-preserving versus the self-preserving identities. The noncompliant category included: anti-authority identity, utilitarian identity, trusting identity and unaware identity. Furthermore, three patterns of identity changes were observed.Research limitations/implicationsThe authors’ narrative stories suggest that employee identities are complex and multi-faceted, and that they may be fluid and adaptive to situational factors. Future research should avoid assumptions that all employees are the same or that employee beliefs remain constant over time or in different contexts. Identities are also strongly rooted in individuals' rearing and other life experiences. Thus, security control is far broader than is studied in behavioral studies. The authors find that history matters and should be examined carefully.Practical implicationsThe authors’ study provides insights that managers can use to enhance security initiatives. It is clear that different employees build different control-related identities. Managers must understand that their employees are unique and will not all respond to policies, punishments, and other forms of control in the same way. The narratives also suggest that many organizations lack appropriate programs to enhance employees' awareness of security issues.Originality/valueThe authors’ narrative analysis suggests that employee security identities are complex and multi-faceted, and that they are fluid and adaptive to situational factors. Research should avoid assumptions that all employees are the same or that their beliefs remain constant over time or in different contexts. Identities are also strongly rooted in individuals' rearing and other life experiences. Their history matters and should be examined carefully.

scholarly journals The understanding of control in patients with advanced cancer. An interpretative phenomenological study

2021 ◽  
Author(s):  
Andrea Rodríguez-Prat ◽  
Denise Pergolizzi ◽  
Iris Crespo ◽  
Albert Balaguer ◽  
Josep Porta-Sales ◽  
...  
Keyword(s):  
Advanced Cancer ◽  
Perceived Control ◽  
Phenomenological Study ◽  
Qualitative Interviews ◽  
Future Research ◽  
Advanced Cancer Patients ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Oncology Unit ◽  
Patients Perspective

Abstract Background In the context of life-threatening illness, loss of control is argued as a source of suffering and loss of perceived dignity, whereas having control over the dying process has been seen as a way of maintaining personal independence. Little is known about meaning of control since the patients’ perspective. Thus, the aim of this study was to explore the meaning of control from the perspective of patients with advanced cancer. Methods We conducted semi-structured qualitative interviews using an interpretive phenomenological analysis approach. Eight patients with advanced cancer from an oncology unit and a palliative care unit from Barcelona (Spain) were interviewed. Results Two themes emerged: 1) factors that influence the perception of control, with subthemes: uncertainty about future suffering, personality traits underlying a need for control; patient-medical interactions; and 2) perceiving control over an uncontrollable illness, explained by perceived control over subjective wellbeing and relinquishing control through coping strategies. Conclusions This study allowed us to understand what control means to advanced cancer patients. The data allowed us to identify strategies that promote a sense of control in these patients. The illness, according to the participants, was experienced as series of losses. However, attention was often focused on areas where they continued to have control. Future research should address how both family members and healthcare professionals can help to empower patients.

Hypoxemia without Respiratory Distress: Hereditary Hemorrhagic Telangiectasia in a Child

2020 ◽  
Author(s):  
Michael D. McCann ◽  
Claire Newlon ◽  
Conrad Krawiec
Keyword(s):  
Hereditary Hemorrhagic Telangiectasia ◽  
Arteriovenous Malformations ◽  
Pediatric Patients ◽  
Pediatric Population ◽  
Genetic Disorder ◽  
Significant Morbidity ◽  
Younger Patients ◽  
Life Threatening ◽  
Symptoms And Signs ◽  
Over Time

AbstractHereditary hemorrhagic telangiectasia (HHT) is an underrecognized genetic disorder of vascular development in pediatric patients. Its presentation can range from mild cutaneous findings to life-threatening hemorrhage from arteriovenous malformations. Clinical diagnosis can be challenging in the pediatric population as disease manifestations evolve over time and may be difficult to identify in younger patients. This case highlights how nonspecific symptoms and signs in the preanesthesia period can be misleading, potentially placing a patient with unrecognized HHT at risk for significant morbidity and mortality.

scholarly journals Healthcare-induced trauma in correctional facilities: a qualitative exploration

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Johanna E. Elumn ◽  
Layne Keating ◽  
Amy B. Smoyer ◽  
Emily A. Wang
Keyword(s):  
Qualitative Interviews ◽  
Healthcare Providers ◽  
Future Research ◽  
Correctional Facilities ◽  
Critical Realist ◽  
Life Threatening ◽  
Correctional Settings ◽  
Social And Physical Environment ◽  
Emerging Themes ◽  
Qualitative Exploration

Abstract Background While incarcerated people are known to experience trauma at higher rates than the general population, little is known about how the correctional health system contributes to trauma rates. Methods We conducted 20 semi-structured qualitative interviews with men who were recently released from a correctional system to understand their experiences with healthcare systems and medical staff during incarceration. Using reflexive thematic analysis within a critical realist framework, we coded and analyzed the data iteratively to refine and unify emerging themes. Results The unanticipated concept of healthcare-induced trauma emerged and was revealed in three overall themes: (1) healthcare leading to fear of serious illness or death, (2) healthcare leading to fear of people, including healthcare providers, correctional staff, and other incarcerated people, and (3) the correctional institutional, social, and physical environment leads to fear of place. Conclusions Healthcare in correctional settings has the potential to induce trauma, even when the medical conditions addressed are not life-threatening. Future research should examine the factors contributing to the development of healthcare-induced trauma in correctional settings and develop interventions to prevent and address this phenomenon.

scholarly journals Research Creativity and Productivity in Political Science: A Research Agenda for Understanding Alternative Career Paths and Attitudes Toward Professional Work in the Profession

2019 ◽  
Vol 53 (1) ◽  
pp. 79-83
Author(s):  
Kim Quaile Hill
Keyword(s):  
Research Productivity ◽  
Career Paths ◽  
Research Agenda ◽  
Scientific Literature ◽  
Future Research ◽  
Scientific Career ◽  
Scientific Careers ◽  
Publication Success ◽  
General Scientific ◽  
Over Time

ABSTRACTA growing body of research investigates the factors that enhance the research productivity and creativity of political scientists. This work provides a foundation for future research, but it has not addressed some of the most promising causal hypotheses in the general scientific literature on this topic. This article explicates the latter hypotheses, a typology of scientific career paths that distinguishes how scientific careers vary over time with respect to creative ambitions and achievements, and a research agenda based on the preceding components for investigation of the publication success of political scientists.

A Downward Spiral? A Panel Study of Misinformation and Media Trust in Chile

2021 ◽  
pp. 194016122110252
Author(s):  
Sebastián Valenzuela ◽  
Daniel Halpern ◽  
Felipe Araneda
Keyword(s):  
News Media ◽  
Panel Study ◽  
Future Research ◽  
Panel Survey ◽  
Downward Spiral ◽  
The Media ◽  
Media Trust ◽  
People’S Attitudes ◽  
Over Time

Despite widespread concern, research on the consequences of misinformation on people's attitudes is surprisingly scant. To fill in this gap, the current study examines the long-term relationship between misinformation and trust in the news media. Based on the reinforcing spirals model, we analyzed data from a three-wave panel survey collected in Chile between 2017 and 2019. We found a weak, over-time relationship between misinformation and media skepticism. Specifically, initial beliefs on factually dubious information were negatively correlated with subsequent levels of trust in the news media. Lower trust in the media, in turn, was related over time to higher levels of misinformation. However, we found no evidence of a reverse, parallel process where media trust shielded users against misinformation, further reinforcing trust in the news media. The lack of evidence of a downward spiral suggests that the corrosive effects of misinformation on attitudes toward the news media are less serious than originally suggested. We close with a discussion of directions for future research.

scholarly journals ‘Living in parallel worlds’ – bereaved parents’ experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study

2021 ◽  
pp. 026921632110017
Author(s):  
Cherith J Semple ◽  
Eilís McCaughan ◽  
Esther R Beck ◽  
Jeffrey R Hanna
Keyword(s):  
End Of Life ◽  
Psychosocial Adjustment ◽  
Family Life ◽  
Life Experience ◽  
Qualitative Interviews ◽  
Later Life ◽  
Support Service ◽  
Dependent Children ◽  
Bereaved Parents ◽  
Death Of A Parent

Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents’ experience and needs for families when a parent is at end of life from cancer with dependent children. Design: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. Results: Parents often live in ‘parallel worlds’ throughout the end of life period. In one world, ‘living in the moment’, cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as ‘intermitted glimpses that death is approaching’, shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly ‘falling off the cliff’; placing significant demands on the well-parent. Conclusions: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.

scholarly journals A Bibliometric Network Analysis of Coronavirus during the First Eight Months of COVID-19 in 2020

2021 ◽  
Vol 18 (3) ◽  
pp. 952 ◽  
Author(s):  
Leonardo B. Furstenau ◽  
Bruna Rabaioli ◽  
Michele Kremer Sott ◽  
Danielli Cossul ◽  
Mariluza Sott Bender ◽  
...  
Keyword(s):  
Decision Making ◽  
Network Analysis ◽  
Web Of Science ◽  
Future Research ◽  
Future Trends ◽  
Damage Prevention ◽  
Over Time ◽  
The Web

The COVID-19 pandemic has affected all aspects of society. Researchers worldwide have been working to provide new solutions to and better understanding of this coronavirus. In this research, our goal was to perform a Bibliometric Network Analysis (BNA) to investigate the strategic themes, thematic evolution structure and trends of coronavirus during the first eight months of COVID-19 in the Web of Science (WoS) database in 2020. To do this, 14,802 articles were analyzed, with the support of the SciMAT software. This analysis highlights 24 themes, of which 11 of the more important ones were discussed in-depth. The thematic evolution structure shows how the themes are evolving over time, and the most developed and future trends of coronavirus with focus on COVID-19 were visually depicted. The results of the strategic diagram highlight ‘CHLOROQUINE’, ‘ANXIETY’, ‘PREGNANCY’ and ‘ACUTE-RESPIRATORY-SYNDROME’, among others, as the clusters with the highest number of associated citations. The thematic evolution. structure presented two thematic areas: “Damage prevention and containment of COVID-19” and “Comorbidities and diseases caused by COVID-19”, which provides new perspectives and futures trends of the field. These results will form the basis for future research and guide decision-making in coronavirus focused on COVID-19 research and treatments.

scholarly journals Teacher enthusiasm and students’ social-behavioral learning engagement: The mediating role of student enjoyment and boredom in Chinese EFL classes

2021 ◽  
pp. 136216882110145
Author(s):  
Jean-Marc Dewaele ◽  
Chengchen Li
Keyword(s):  
Second Language Acquisition ◽  
Qualitative Interviews ◽  
Future Research ◽  
Learning Engagement ◽  
Behavioral Learning ◽  
Mediating Role ◽  
English Classes ◽  
Teacher Enthusiasm ◽  
Instructed Second Language Acquisition ◽  
Complex Relationships

Teacher enthusiasm is attracting growing attention in educational and learner psychology research. There is evidence that teacher enthusiasm is contagious in class and positively affects student emotions. Their fundamental role in shaping student engagement has also been well documented. However, the links – between teacher enthusiasm and student emotions, and between student emotions and engagement – remain underexplored in instructed second language acquisition. The present study adopted a mixed-method approach to examine the complex relationships between perceived teacher enthusiasm, emotions (enjoyment and boredom), and social-behavioral learning engagement among 2,002 learners of English as a foreign language (EFL) from 11 universities in China. Quantitative analyses showed small to large correlations between perceived teacher enthusiasm, enjoyment, boredom, and social-behavioral learning engagement. In addition, student enjoyment and boredom were found to co-mediate the relationship between perceptions of teacher enthusiasm and student social-behavioral engagement in English classes. Qualitative interviews with nine students provided insights into the potential causes of the statistical patterns. Theoretical and pedagogical implications are discussed, followed by directions for future research.

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