Scleroderma Patients’ Commitment to Illness Management: Strategies and Learning

The management of chronic diseases is described as the “health challenge of the 21st century” by the World Health Organization. Patients’ active role in managing their illness is considered, by many, as central in addressing this challenge. This study explored and described, through scleroderma patients’ own perceptions and understanding, their commitment to illness management, including how they were involved in dealing with their illness and how they learned to do so. The role of social interactions, in particular, support groups, in this process was also investigated. Using a mixed-methods approach, 201 patients were surveyed, and 25 in-depth interviews were conducted. The quantitative results of this study indicated that 64% of patients were committed in managing their illness by being highly active in dealing with their illness. An increase in activation was associated with longer disease duration in the first decade of illness. Additionally, the patients with high social support were more active. The qualitative findings showed patients engaged with various types of work to mitigate the physical, emotional, psychological, relational, and financial impact of the illness. In doing so, patients employed four problem-solving strategies that they had learned by confronting problems in daily lives. These strategies were at the heart of their incidental and tacit learning of how to manage their illness. Only 32% of patients participated in support groups. Support group participants showed higher activation and considered these groups as providing support, learning opportunities, and venues to help other patients. This study indicates that patients’ commitment to management of their illness, far from being a static characteristic of patients, is a spectrum where patients are engaged in a process of complex negotiation with multiple needs of their illness, in tandem with their illness trajectory. Illness uncertainty, learning, and strategies to solve problems in managing the illness frame patients’ commitment and engagement. A preliminary model delineating these elements is provided

Information and Communication Technologies in Tourism 2021

This open access book is the proceedings of the International Federation for IT and Travel & Tourism (IFITT)’s 28th Annual International eTourism Conference, which assembles the latest research presented at the ENTER21@yourplace virtual conference January 19–22, 2021. This book advances the current knowledge base of information and communication technologies and tourism in the areas of social media and sharing economy, technology including AI-driven technologies, research related to destination management and innovations, COVID-19 repercussions, and others. Readers will find a wealth of state-of-the-art insights, ideas, and case studies on how information and communication technologies can be applied in travel and tourism as we encounter new opportunities and challenges in an unpredictable world

Computational Approaches to Characterizing Online Health Communities

Online health communities (OHCs) have been increasingly popular among patients with chronic or life-threatening illnesses for the exchange of social support. Contemporary research of OHCs relies on methods and tools to handle analytics of massive user-generated content at scale to complement traditional qualitative analysis. In this thesis, we aim at advancing the area of research by providing computational tools and methods which facilitate automated content analysis, and by presenting applications of these tools to investigating member characteristics and behaviors. We first provide a framework of conceptualization to systematically describe problems, challenges, and existing solutions for OHCs from a social support standpoint, to bridge the knowledge gap between health psychology and informatics. With this framework in hand, we define the landscape of online social support, summarize current research progress of OHCs, and identify research questions to investigate for this thesis. We then build a series of computational tools for analyzing OHC content, relying on techniques of machine learning and natural language processing. Leveraging domain-specific features, our tools are tailored to handle content analysis tasks on OHC text effectively. Equipped with computational tools, we demonstrate how characteristics of OHC members can be identified at scale in an automated fashion. In particular, we build up multi-dimensional descriptions for patient members, consisting of what topics they focus on, what sentiment they express, and what treatments they discuss and adopt. Patterns of how these member characteristics change through time are also investigated longitudinally. Finally, relying on computational analytics, members' behaviors of engagement such as debate and dropping-out are identified and characterized. Studies presented in this thesis discover static and longitudinal patterns of member characteristics and engagement, which are potential research hypotheses to be explored by health psychologists and clinical researchers. The thesis also contributes to the informatics community by making computational tools, lexicons, and annotated corpora available to facilitate future research

The medical profession and the universalisation of South African Health Care: analysing the response of Eastern Cape general practitioners to the National Health Insurance proposals

In 2011, the Green Paper on National Health Insurance (NHI) in South Africa was released, committing the South African government to a 14-year plan to radically transform the currently inequitable health system towards providing comprehensive quality health care free at point of access to all citizens. The pursuit of universal health coverage (UHC) in South Africa forms part of a global aspiration to achieve more equitable healthcare delivery. One of the critical issues emerging from the Green Paper was how the NHI would be staffed. The NHI is unlikely to be adequately staffed without GPs but evidence suggests that private sector doctors have always been resistant to nationalisation or socialisation as a threat to their occupational power and professional status. The core work of this thesis is a study undertaken of 78 doctors in the Eastern Cape, focusing on private sector general practitioners (GPs), as the largest constituency of medical professionals in the country. The interview schedule was designed to gauge doctors' responses to the NHI, encourage discussion on their reactions to the reforms, and its implications in their view for private medical practice. The responses of the doctors are analysed through application of two theoretical themes, namely: (i) actor-centred policy creation, discussed through application of Walt and Gilson's (1994) shared focus on content, context, process and actors in the policy process, and (ii) the debate on medical professionalism, espoused by Freidson (1973, 1994) and argued against by Haug and Sussman (1969), and McKinlay (1972, 1993). Thus, if the process of policy making must take into account key actors in order to deliver a successful policy transition, what are the implications if these actors are actively excluded, or do not willingly cooperate? Does this indicate anything telling about the private sector's role to play in the pursuit of universal healthcare

Social media narratives in non-communicable disease: their dynamics and value for patients, communities and health researchers

Background: Usage of social media is now widespread and growing, as is the number of people living with Non-Communicable Diseases (NCDs) such as diabetes and cancer. This thesis examines how social media are being used to share or discuss NCDs and the benefits, challenges and implications of these trends as a manifestation of digital public health. Aim and research questions: The aim of this research is to address the gap in empirical, evidence-based research into the secondary use of data from social media to understand patient health issues and inform public health research into NCDs. To this end, seven research questions, each linked to a sub-project, were defined and tested during the course of the six-year programme: 1.What is the status of the existing multi-disciplinary research literature based on analysis of data posted on social media for public health research, and where are the gaps in this research? 2.Can existing systematic review methods be re-purposed and applied to analyse data posted on social media? 3.How are research sponsors and researchers addressing the ethical challenges of analysing data posted on social media? 4.To what extent are diabetes-related posts on Twitter relevant to the clinical condition and what topics and intentions are represented in these posts? 5.In what ways do people affected by Type 1 diabetes use different social media (e.g. for social interaction, support-seeking, information-sharing) and what are the implications for researchers wishing to use these data sources in their studies? 6.Are these differences in platform usage and associated data types also seen in people affected by lung cancer? 7.Can characteristic illness trajectories be seen in a cancer patient’s digital narrative and what insights can be gained to inform palliative care services? Methods: A range of different qualitative and quantitative methods and frameworks were used to address each of the research questions listed. Arksey and O’Malley’s five-stage scoping review framework and the PRISMA guidelines are applied to the systematic scoping review of existing literature. The PRISMA guidelines and checklist are re-purposed and applied to the manual extraction and analysis of social media posts. Bjerglund-Andersen and Söderqvist’s typology of social media uses in research and Conway’s taxonomy of ethical considerations are used to classify the ethics guidelines available to researchers. The findings of these were used to inform the research design of the four empirical studies. The methods applied in the conduct of the empirical studies include a content and narrative analysis of cross-sectional and longitudinal data sourced from Twitter, Facebook, the Type 1 diabetes discussion forum on Diabetes.co.uk and the lung cancer discussion forum on Macmillan.org.uk, as well as the application of Bales’ Interaction Process Analysis and Emanuel and Emanuel’s framework for a good death. Results : Of the 49 systematic, quasi-systematic and scoping reviews identified, 24 relate to the secondary use of data from social media, with eight of these focused on infectious disease surveillance and only two on NCDs. Existing reviews tend to be fragmented, narrow in scope and siloed in different academic communities, with limited consideration of the different types of data, analytical methods and ethical issues involved, therefore creating a need for further reviews to synthesise the emerging evidence-base. The rapid increase in the volume of published research is evident, from the results of RQ1, with 87% of the eligible studies published between 2013-2017. Of the 105 eligible empirical studies that focused on NCDs, cancer (54%) and diabetes (20%) dominate the literature. Data is sourced from Twitter (26%), Facebook (14%) and blogs (10%), conducted, published and funded by the medical community. Since 2012, automated methods have increasingly been applied to extract and analyse large volumes of data. Those that use manual methods for extraction did not apply a consistent approach to doing so; the PRISMA guidelines and checklist were therefore re-purposed and applied to analyse data extracted from social media in response to RQ2. The deficit of ethical guidance available to inform research that involves social media data was also identified as a result of RQ3 and the guidelines provided by the ESRC, BPS, AoIR and NIHR were prioritised for the purposes of this research project. Results from the four empirical studies (RQ4-7) reveal that different forms of social interaction and support are represented in the variety of social media platforms available and that this is influenced by the type and nature of the condition with which people are affected, as well as the affordances offered by such platforms. In the pilot study associated with RQ4, Twitter was identified as a ‘noisy’ source of data about diabetes, with only 66% of the sample being relevant to the clinical condition. Twelve per cent of the eligible sample was associated with Type 2 diabetes, compared to 6% for Type 1, and most were information-giving in nature (49%) and correlated with the diagnosis, treatment and management of the condition (44%). A comparison of Twitter to the Type 1 Diabetes community on Facebook and the discussion forum on Diabetes.co.uk for RQ5 indicated that all three social media platforms were used to disseminate information about the condition. However, the Type 1 Diabetes Group on Facebook and the Type 1 discussion forum on Diabetes.co.uk were also used for social interaction and peer support, hence defying the generalisations made in public health studies, where social media platforms were often considered equal or synonymous. The results from the third empirical study into lung cancer (RQ6) support this, indicating that, by virtue of their digital architecture, user base and self-moderating communities, the Lung Cancer Support Group on Facebook and the lung cancer discussion forum on Macmillan.org.uk are more successful in their utility for social interaction and emotional and informational support. Meanwhile, the sample derived from Twitter hashtags showed greater companionship support. The final empirical study in this PhD research project is associated with RQ7 and used longitudinal data posted by a terminally ill patient on Twitter. This revealed that patient activity on social media mirrors the different phases of the end-of-life illness trajectory described in the literature and that it is comparable to or compliments insights garnered using more traditional qualitative research techniques. It also shows the value of such innovative methods for understanding how terminal disease is experienced by and affects individuals, how they cope, how support is sought and obtained and how patients feel about the ability of palliative care services to meet their needs at different stages. Conclusions: The analysis of health data posted on social media continues to be an expanding and evolving field of multi-disciplinary research. The results of the studies included in this thesis reveal the emergence of new methods and ethical considerations to inform research design as well as ethics policy. The re-purposed PRISMA guidelines and checklist were presented at the 2014 Medicine 2.0 Summit and World Congress whilst the review of ethical guidelines was published in the Research Ethics journal. The four empirical studies that extracted and analysed data from social media provide novel insight into the social narratives of those impacted by diabetes and cancer and can be used to inform future research and practice. The results of these studies have, to date, been presented at four international conferences and published in npj Digital Medicine and BMC Palliative Care. Although this thesis and associated publications contribute to an emerging body of knowledge, further research is warranted into the manual versus automated techniques that can be applied and the differences in social interaction and support needed by people affected by different NCDs

COVID-19 Outbreak and Beyond

The COVID-19 pandemic drastically changed our lifestyle when, on 30 January 2020, the World Health Organization declared the coronavirus disease outbreak a public health emergency of international concern. Since then, many governments have introduced unprecedented containment measures, hoping to slow the spread of the virus. International research suggests that both the pandemic and the related protective measures, such as lockdown, curfews, and social distancing, are having a profound impact on the mental health of the population. Among the most commonly observed psychological effects, there are high levels of stress, anxiety, depression, and post-traumatic symptoms, along with boredom and frustration. At the same time, the behavioral response of the population is of paramount importance to successfully contain the outbreak, creating a vicious circle in which the psychological distress impacts the willingness to comply with the protective measures, which, in turn, if prolonged, could exacerbate the population’s distress. This book includes: i) original studies on the worldwide psychological and behavioral impact of COVID-19 on targeted individuals (e.g., parents, social workers, patients affected by physical and mental disorders); ii) studies exploring the effect of COVID-19 using advanced statistical and methodological techniques (e.g., machine learning technologies); iii) research on practical applications that could help identify persons at risk, mitigate the negative effects of this situation, and offer insights to policymakers to manage the pandemic are also highly welcomed