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This study examined dimensions of young-adulthood development in lived experience reported by young persons (19 women, 18 men) with the disabling condition of kidney failure requiring chronic dialysis or kidney transplantation. In semistructured phone interviews, participants (ages 23–37) described their family/living situation, employment and community activity, current situation, and experience. Participants' qualitative responses about “the way you see things, do things, feel about things” and “how you feel about yourself” were examined to identify themes. Limited achievement of proposed “successful” dimensions of young adulthood characterized the study cohort, based on indicators included in the interview. In qualitative data, the theme of perceived stigma and spoiled identity (Goffman, 1963) was reflected in comments offered by participants regarding their self-confidence and motivation to pursue goals. A second theme in participants' qualitative responses was a sense of isolation from age peers who shared their condition, and participants expressed frustration around having an age-inappropriate condition (“why me?”). Perceived stigma and spoiled identity impact social ties and life goals and are understudied influences in the life course trajectory of young persons with kidney failure and the challenges inherent in navigating health status and developmental life course transitions.

This study aims to develop a hierarchical model that uncovers the relationships between challenges confronting Africa's organ transplant supply chain systems.

Eleven challenges (variables) were identified after a comprehensive review of the existing literature. The contextual interactions among these variables were analysed from the perspectives of health-care stakeholders in two sub-Saharan Africa (SSA) countries (Nigeria and Uganda), using Delphi-interpretive structural modelling-cross-impact matrix multiplication applied to classification (MICMAC) techniques.

The findings reveal that weak regulatory frameworks, insufficient information systems and a lack of necessary skills make it challenging for critical actors to perform the tasks effectively. The interaction effects of these challenges weaken organ supply chains and make it less efficient, giving rise to negative externalities such as black markets for donated organs and organ tourism/trafficking.

This paper establishes a solid foundation for a critical topic that could significantly impact human health and life once the government or non-profit ecosystem matures. The MICMAC analysis in this paper provides a methodological approach for future studies wishing to further develop the organ supply chain structural models.

The study provides valuable insights for experts and policymakers on where to prioritise efforts in designing interventions to strengthen organ transplantation supply chains in developing countries.

This study is one of the first to empirically examine the challenges of organ transplant supply chains from an SSA perspective, including theoretically grounded explanations from data collected in two developing countries.

This study explores citizen activism in the articulation of a politicised counter-account of Aboriginal rights. It aims to uncover the enabling factors for a successful challenge to established political norms and the obstacles to the fullest expression of a radical imagining.

Laclau and Mouffe's theory of hegemony and discourse is used to frame the movement's success in challenging the prevailing system of urbanised healthcare delivery. Empirical materials were collected through extensive ethnographic fieldwork.

The findings from this longitudinal study identify the factors that predominantly influence the transformational success of an Yaṉangu social movement, such as the institutionalisation of group identity, articulation of a discourse connected to Aboriginal rights to self-determination, demonstration of an alternative imaginary and creation of strong external alliances.

This study offers a rich empirical analysis of counter-accounting in action, drawing on Aboriginal governance traditions of non-confrontational discourse and collective accountability to conceptualise agonistic engagement. These findings contribute to the practical and theoretical construction of democratic accounting and successful citizen activism.

This chapter more clearly identifies the distinction between Electronic Health Record (EHR) and Electronic Medical Record (EMR), and states their value in obtaining individual-level data. Synthetic medical records may be used as a surrogate for EHR data in order to ensure digital data privacy is maintained during the development of the LHS. Synthea is an open-source simulation tool available through GitHub.¹ Extensive descriptive analysis of synthesized data is provided as a foundation for the analysis in Chapter 7.

This chapter analyzes the campaign against race norming in the 2013 National Football League (NFL) concussion settlement that caregivers of retired players designed, and it considers how their collective action throws new light on activism in sport. While there is a substantial literature on how individual athletes engage in protest, less work has focused on how families – partners, children, siblings, and parents – of athletes organize as a group to answer back to anti-Black racism in professional sport. I argue that a group of spouses used their position as caregivers to shame the NFL, the presiding judge of the settlement, Class Counsel, and even the Department of Justice into acknowledging not only individual suffering from traumatic brain injury but also of the distribution of that suffering across households. Specifically, the wives group expanded definitions of risk and damage to include not only individual illness but also family and group suffering and demanded inclusion of gendered and racialized aspects of social care. Through their campaign, the group recast what is considered protest in the world of sport and who has the ability to access an activist subjectivity.

Extant research shows mixed results on the impact of expressed negative emotions on donations in online charitable crowdfunding. This study solves the puzzle by examining how different types of negative emotions (i.e. sadness, anxiety and fear) expressed in crowdfunding project descriptions affect donations.

Data on 15,653 projects across four categories (medical assistance, education assistance, disaster assistance and poverty assistance) from September 2013 to May 2019 come from a leading online crowdfunding platform in China. Text analysis and regression models serve to test the hypotheses.

In the medical assistance category, the expression of sadness has an inverted U-shaped effect on donations, while the expression of anxiety has a negative effect. An appropriate number of sadness words is helpful but should not exceed five times. In the education assistance and disaster assistance categories, the expression of sadness has a positive effect on donations, but disclosure of anxiety and fear has no influence on donations. Expressions of sadness, anxiety and fear have no impact on donations in the poverty assistance category.

This work has important implications for fundraisers on how to regulate the fundraisers' expressions of negative emotions in a project's description to attract donations. These insights are also relevant for online crowdfunding platforms.

Online crowdfunding research often studies negative emotions as a whole and does not differentiate project types. The current work contributes by empirically testing the impact of three types of negative emotions on donations across four major online crowdfunding categories.

Personal data is a powerful tool. The more someone know about us, the more power they got over us. But who will control the most of our personal data? Does the government and the big tech really care about our personal data? This paper aims to look at data practices, data-related policy making as well as its economic consequences in the context of emerging economies.

Using qualitative methods such as literature review and analysis of numerous government documents, this paper inquires into the dynamics in the use of data by the business sectors, explains how data governance can add value to the business sectors while ensuring customers’ data privacy protection based on the data governance mechanism framework and details what it takes.

Using the case of Indonesian recent development on data privacy regulation, this paper describes the problems and threats to personal data protection. The advent of latest computing and mobile technology is shifting power relations between the governments, the big tech, as well as the end users. To conclude, the strategy and policy recommendations for implementing data privacy protection are also presented.

This paper provides a timely synthesis of data practices in the context of developing countries, particularly in relation to policy making and economic consequences. This paper also identifies and shares several promising future research ideas.

Medical diagnosis and treatment processes exhibit a high degree of variability, as during the process execution, healthcare professionals can decide on additional steps, change the execution order or skip a task. Process models can help to document and to discuss such processes. However, depicting variability in graphical process models using standardized languages, such as Business Process Model and Notation (BPMN), can lead to large and complicated diagrams that medical staff who do not have formal training in modeling languages have difficulty understanding. This study proposes a pattern-based process visualization that medical doctors can understand without extensive training. The process descriptions using this pattern-based visualization can later be transformed into formal business process models in languages such as BPMN.

The authors derived patterns for expressing variability in healthcare processes from the literature and medical guidelines. Then, the authors evaluated and revised these patterns based on interviews with physicians in a Danish hospital.

A set of business process variability patterns was proposed to express situations with variability in hospital treatment and diagnosis processes. The interviewed medical doctors could translate the patterns into their daily work practice, and the patterns were used to model a hospital process.

When communicating with medical personnel, the patterns can be used as building blocks for documenting and discussing variable processes.

The patterns can reduce complexity in process visualization. This study provides the first validation of these patterns in a hospital.

There is evidence of Bangladeshi citizens travelling to India to receive medical treatments, known as medical tourism. This study aims to explore the perceived justice dimensions of Bangladeshi patients towards domestic health care and the effects of these dimensions on their intention for outbound tourism to India.

Data from 307 Bangladeshi medical tourists were collected to test the proposed model. The data has been interpreted through the proposed model with covariance-based structural equation modelling in AMOS. To produce the results, the measurement model and structural model were examined.

The analysis confirmed the significant impact of procedural, informational and interpersonal justice dimensions on patients’ health-care experiences. However, the effect of distributive justice on patient experience has been found insignificant. The study also revealed a significant negative impact of patient satisfaction on outbound medical tourism intention. Thus, it raises concerns for the local medical service providers about improving patient satisfaction.

The findings of this paper can be applicable for health-care practitioners and policymakers in emerging countries to improve the bottlenecks of the health-care system for increasing patients’ service experiences and reducing the intention of patients for outbound medical tourism.

The research on perceived justice theory regarding the intention of medical tourism is limited. This research is one of the few studies to combine perceived justice theory with trust and medical tourism decision-making. Using the lens of perceived justice, this research argues that the decrease in perceived justice negatively affects the patients’ service experience, trust and loyalty to the service provider.