This submission presents a portfolio of 50 outputs (3 books, 7 book chapters and 40 journal articles) that were
published between 2000 - 2020. This accompanying narrative offers a frame for these outputs to place them in the
context of the wider literature and to highlight connections and developments in the underpinning thought
processes. Here I exploit the Deleuzian figuration of the rhizome to present the portfolio to emphasise the non
linear nature of this body of work and provide a novel conceptual framework for analysis.
This corpus emerged from my initial exploration of Novakian concept mapping as a tool to support and document
learning. From my early studies that built on the dominant discourse of the field, I examined concept mapping as
a study aid. From this my interests diverged into the visualisation of expertise and the implications of variation in
the structure of knowledge as depicted by students and as promoted in the curriculum.
I started to use concept mapping to explore educational theory and have combined the tool that is strongly linked
to its origins in educational psychology (particularly the work of David Ausubel) with other theoretical positions
that might inform teaching in higher education. These have included ideas from the sociology of education
(particularly the work of Basil Bernstein and Karl Maton); ideas from evolutionary Biology (Stephen Jay Gould’s
concept of exaptation); ideas from health sciences (particularly the work on Salutogenesis by Anton Antonovsky),
and the post-structuralist ideas of Gilles Deleuze (especially the concept of the rhizome). These ideas offer an
opportunity to revise and refresh the assumptions that underpinned Joe Novak’s work on concept mapping – that
might increase the level of criticality in continuing research.
This work raises questions about the methodological conservatism of the field of concept mapping (and perhaps
of higher education research more broadly). The observed methodological and conceptual conservatism of the
concept mapping literature is seen as a consequence of its linear (arborescent) development from science
education. Through this work, the reader can trace the development of the researcher from his roots in Biological
Sciences towards a greater appreciation of post-structuralist perspectives – challenging the conservatism
This thesis explores feminist women's experiences of online gendered hate: abusive, threatening or upsetting acts or comments which are often sexual, violent, or gendered in content, and which target women in public online spaces. This work draws directly on the experiences of feminist women in England and Wales, using data gathered during focus groups and interviews, and analysed within frameworks offered by feminist and hate crime scholars. The participants were feminist women who had directly received abuse themselves, or had experienced online gendered hate indirectly: through reading about this or seeing other women being targeted.
Accounts given by participants showed the importance of the internet as a space in which they could practice, perform, and develop their feminism. However this was also a world in which women experienced a continuum of abusive acts. Setting this study apart from existing research is the finding that ‘mundane’ behaviours (often treated as trolling) were seen as abusive and harmful by many of the participants. Using these findings, this research develops a model for conceptualising online gendered hate.
Analysis revealed that feminist women's participation in online spaces was disrupted by abusive behaviours. This thesis argues that the ways in which online abuse controls women's participation in the online world is wider than has previously been understood: women did not have to experience abuse directly to be constrained by it. In this, online gendered hate sends a message to all feminist women online about what is (and is not) appropriate performance of difference (Perry, 2001). This research examined how women attempted to fight back and resist online abuse, concluding that no one strategy was successful. Reflection is given to how the findings of this research contribute to contemporary debates on the inclusion of misogyny as a strand of hate crime in England and Wales.
Background: Artificial intelligence (AI) is said to be “transforming mental health”. AI-based technologies and technique are now considered to have uses in almost every domain of mental health care: including decision-making, assessment and healthcare management. What remains underexplored is whether/how mental health recovery is situated within these discussions and practices.
Method: Taking conversational agents as our point of departure, we explore the ways official online materials explain and make sense of chatbots, their imagined functionality and value for (potential) users. We focus on three chatbots for mental health: Woebot, Wysa and Tess.
Findings: “Recovery” is largely missing as an overt focus across materials. However, analysis does reveal themes that speak to the struggles over practice, expertise and evidence that the concept of recovery articulates. We discuss these under the headings “troubled clinical responsibility”, “extended virtue of (technological) self-care” and “altered ontologies and psychopathologies of time”.
Conclusions: Ultimately, we argue that alongside more traditional forms of recovery, chatbots may be shaped by, and shaping, an increasingly individualised form of a “personal recovery imperative”.
Proton Beam Therapy (PBT) is a new type of therapy used to treat rare and complex tumours. PBT is claimed to improve patients’ quality-of-life by reducing treatment-related side effects and the risk of long-term complications; although long-term evidence for this is limited. Since 2008, NHS patients have had access to proton treatment through a government funded scheme, although access is restricted to an eligible list of users. Since the start of this scheme, the majority of treated patients have been paediatric patients. This research examines the experiences of parents of paediatric patients, treated with proton therapy. This is the first piece of research to examine users’ experiences involving proton treatment. Proton beam therapy is a new type of treatment and it is not known how users experience, perceive and make decisions involving this treatment.
This is a qualitative inquiry based on joint and single interviews, carried out with 27 parents; eight fathers and 19 mothers. Participants were recruited via an online support group, as well as charities. A total of 21 families participated in this study; two families fell into the category of ‘self-funded’, meaning they opted for proton therapy against the advice of their child’s primary team of doctors and privately raised funds for treatment. The remaining families were sponsored by the NHS. Additionally, discourse analysis of patient information documents related to proton treatment was conducted. Juxtaposing the outcome of the discourse analysis with the accounts presented by parents in their interviews sheds insight into the different perspectives and experiences, if any, and enables us to look at whether and where contrasting views are reflected and reproduced, and the implications these may have.
The way parents view and understand PBT and approach decision-making about this new therapy, and other treatments, are explored in this study. Additionally, this research situates parental knowledge and work, deployed in the management of their child’s illness and treatment, as expertise. Through attaining this expertise parents reclaim some order of control, protect their parental role and responsibility and manage some of their uncertainties. Exploration of these parents’ post-treatment accounts highlights a range of on-going health issues and uncertainties, some specific to PBT, which impede aspects of their child’s recovery. The literature on recovery is primarily focused on an individualistic adult patient perspective, however this research conceptualises recovery from childhood illnesses as a joint venture shared between parent(s) and child. Findings presented in this thesis contribute to the sociology of health and illness, and family studies, by providing insight into the experiences of parents of paediatric patients treated with proton therapy. It also contributes to sociological literature on expertise and recovery.
Young people’s understandings of living well are informed by shared sociocultural stories of the good life which have social and environmental implications and affect the possibility of sustainable and fair futures. As visual culture and social media gain importance in young people’s lives, they increasingly shape young people’s processes of meaning-making in relation to living well. This thesis aims to progress the search for fairer and more sustainable understandings of the good life by identifying which good life narratives young people use and have access to; speculating on their implications for sustainable and fair living; and exploring the role of visual mediums and social and material infrastructures in shaping these narratives and their availability. Research material is approached through a phenomenological hermeneutic framework. Analysis is based on two studies: a) a filmmaking project with four groups of 10-14 year-olds in which participants created short films about living well and; b) an exploration of the understandings of the good life accessible on Instagram through hashtag #goodlife. Each project identifies three narratives: a) the good life as luxury, as normal life, and as caring life in the filmmaking project; and b) the good life of the affluent entrepreneur, of the world-traveller, and as shared experience on Instagram. Two of these narratives (the good life as caring life and as shared experience) are less common but have more potential to support fair and sustainable futures. Findings suggest that infrastructures, which are disproportionately shaped in favour of less sustainable understandings of living well, are key in making resources available for meaning-making. Considering the theoretical possibilities of a shift in dominant narratives by linking ethics and aesthetics, the thesis concludes by making the case for injunctive normativity in research and beyond in our appraisals of good life narratives.
This research explores the extent to which employees in the UK manage their emotions on SNSs as they try to ensure their activities conform to their employers’ expectations in a competitive and unsecure labour market. This topic was explored by interviewing forty employees aged over twenty-five from a range of professions and who use at least one of the social networking platforms. The participants’ personal experiences of some of the new features of the UK labour market, such as labour market insecurities, as well as their distinctive domestication of SNSs, form a backdrop for the exploration of whether they tailor and suppress their performances and emotions on SNSs. As a result, this study explored the extent to which the interviewees perform emotional labour on SNSs as they manage their emotions to meet their employers’ expectations. Previous studies on the use of the various forms of social networking sites have focused primarily on children, teenagers and young adults, usually between the ages of thirteen and twenty-five. These studies explored how young adults use these SN platforms to strengthen their social capital and manage online impressions, as well as their perception of online privacy and surveillance. While these issues may be relevant to older adults’ use of social networking sites, it was proposed that using these SN platforms and, at the same time, ensuring employers’ expectations are met in an unsecure and competitive labour market, might add further complexities to their experiences. Drawing on the literature on the current state of the labour market, social practices on networking sites and emotional labour with respect to conforming to employers’ expectations, this present study used the theories of Goffman on dramaturgy, Hochschild and Bolton on emotion management, Standing on the precarious society, boyd on collapse contexts and networked publics, and Silverstone and Hirsch on domestication to frame the research questions, design and analysis. Findings revealed that within this group of employees, SN platforms have not only become a vital tool to interpret and adapt to certain new features of the UK labour market, such as the increase in labour market insecurities, but have also become a site where emotional labour is performed to an extent. Surprisingly, there were many similarities in the way these participants use and incorporate these platforms, irrespective of certain demographics such as their type of profession, gender and age that were initially assumed to lead to major differences. It was observed that the majority of the interviewees experience various emotions and feel obliged to tailor, suppress and manage these emotions in the workplace and on SNSs to meet their employers’, and in some cases their colleagues and clients’ expectations. This study advocates the notion that since the continuous use of social networking sites involve suppressing, tailoring and negotiating various emotions, they should be considered a site for emotional labour. In conclusion, as the labour market appears to be undergoing significant changes, it may be that other locations besides the workplace and social networking sites, where emotional management is required, may exist. As such, this study provides a foundation potentially useful to explore other complex settings where employees might perform some form of emotion management.
This chapter explores the varied ways in which qualitative and quantitative, large-scale and small-scale research designs have been combined in the study of the Internet. The chapter also considers multimodal and online/offline studies, which explore a research object by combining diverse forms of data drawn by crossing the offline/online boundary or combining digital and analogue data. The focus of the chapter is on exploring the motivations for these combinations and outlining the distinctive issues that heterogeneous research designs in these domains encounter. Internet research has occasioned many innovative research designs, as the sheer quantity of data available online often prompts even those overtly committed to a qualitative paradigm to explore techniques for visualizing data, and exploring patterns on a larger scale through social network analysis or sentiment analysis. The spatial complexities entailed in networked communication often, however, introduce a challenge for researchers seeking to combine perspectives.
Social science research requires methods that are responsive to and congruent with contemporary social formations. Digital technologies present a challenge to which social researchers must rise, and in turn offer the chance to access, generate and analyse new information in new ways and address new research questions. In response to this challenge, this interdisciplinary collection considers the quantitative and qualitative analysis of social media, addressing the contemporary concern with 'big data' but also the rich or 'thick data' available. It provides examples of research that has sought to explore digital methods through comparing and combining these with 'offline' or traditional approaches, and presents case studies that are both innovative in their use of new, existing and combined methods but also question the nature of innovation. It also develops some of the key challenges in mainstreaming digital methods, including debates in educational research, research with young people, and the ethical issues that digital and social researchers face.
Many local online platforms for people to give away or sell items have arisen in recent years. While some research has analysed modes of consumption emerging in such sites, there has been little exploration of the nature of the contact between local residents that these sites occasion and their implications for local sense of community. This paper analyses interviews with users of local online platforms for giving and selling items within one town in south-east England, identifying judgments that users make about one another and exploring the connections that are made between online and offline. Imagining other users and projecting social norms onto them emerges as important in making transactions meaningful. Users also often imagine social difference and make judgments that reproduce socio-economic stereotypes. Usage is portrayed as a positive experience enhancing users’ views of local community in a general sense, but shows limited tendencies to overcome existing social divisions.
The use of information and communication technology in scientific research has been hailed as the means to a new larger-scale, more efficient, and cost-effective science. But although scientists increasingly use computers in their work and institutions have made massive investments in technology, we still have little idea how computing affects the way scientists work and the kind of knowledge they produce. In Systematics as Cyberscience, Christine Hine explores these questions by examining the developing use of information and communication technology in one discipline, systematics (which focuses on the classification and naming of organisms and exploration of evolutionary relationships). Her sociological study of the ways that biologists working in this field have engaged with new technology is an account of how one of the oldest branches of science transformed itself into one of the newest and became a cyberscience. Combining an ethnographic approach with historical review and textual analysis, Hine investigates the emergence of a virtual culture in systematics and how that new culture is entwined with the field's existing practices and priorities. Hine examines the policy perspective on technological change, the material culture of systematics (and how the virtual culture aligns with it), communication practices with new technology, and the complex dynamics of change and continuity on the institutional level. New technologies have stimulated reflection on the future of systematics and prompted calls for radical transformation, but the outcomes are thoroughly rooted in the heritage of the discipline. Hine argues that to understand the impact of information and communication technology in science we need to take account of the many complex and conflicting pressures that contemporary scientists navigate. The results of technological developments are rarely unambiguous gains in efficiency, and are highly discipline-specific.
This article aims to expand on the currently popular practice of conducting ethnographic studies of individual online fan groups to find other ways of using the internet ethnographically for television studies. The example of the Antiques Roadshow is used to explore a strategy for ethnographic attention to the diversity of mundane engagements with a particular television text via the internet. The development of this strategy draws on recent thinking on the constitution of ethnographic field sites, focusing on conceptualization of the field as a made object, and development of multi-sited approaches as appropriate forms of engagement with contemporary culture. This strategy also builds on recent debates about the significance of ‘found’ digital data for social research. Potential problems with this approach include loss of depth and contextualizing information, and the risk of only focusing on that data which is easily found by dominant search engines. These problems can be offset to some extent by increased focus on reflexivity, and by allowing the field site to spill out beyond the internet as the ethnographer finds it necessary and useful in order to explore particular practices of meaning-making.
The internet has become embedded into our daily lives, no longer an esoteric phenomenon, but instead an unremarkable way of carrying out our interactions with one another. Online and offline are interwoven in everyday experience. Using the internet has become accepted as a way of being present in the world, rather than a means of accessing some discrete virtual domain. Ethnographers of these contemporary Internet-infused societies consequently find themselves facing serious methodological dilemmas: where should they go, what should they do there and how can they acquire robust knowledge about what people do in, through and with the internet?This book presents an overview of the challenges faced by ethnographers who wish to understand activities that involve the internet. Suitable for both new and experienced ethnographers, it explores both methodological principles and practical strategies for coming to terms with the definition of field sites, the connections between online and offline and the changing nature of embodied experience. Examples are drawn from a wide range of settings, including ethnographies of scientific institutions, television, social media and locally based gift-giving networks. - See more at: http://www.bloomsbury.com/uk/ethnography-for-the-internet-9780857855701/#sthash.6wmdZKzF.dpuf
This paper focuses on the way in which people deploy scientific knowledge alongside other resources in everyday interactions. In the UK headlice are common amongst schoolchildren, and treatment is viewed as a parental responsibility. Choice between treatment options lies with individual parents, with official guidance giving no clear steer. In the face of this combination of responsibility and uncertainty, users of an online parenting forum justify their actions using a variety of resources, including claims to scientific knowledge of both headlice and the action of various treatments, but also drawing on the authority of having direct experience, trust in brand-named products and generalised suspicion of “chemical” treatments. These discussions occasion expression of knowledge as part of portraying oneself as a responsible parent, and thus while they do not necessarily represent public knowledge about science more generally, they do offer a useful site to explore what people do with science.
Whilst digital technologies are often popularly portrayed as inherently different from their material counterparts, recent research has accentuated continuities between the two. Research on the material aspects of digital technologies has emphasised that both material and digital technologies are embedded in practice and acquire their meaning in context. This is particularly so in science, where research in science and technology studies has illuminated the contextual interpretation of representations and their contingent manifestation through embedding in specific sociotechnical configurations. The current paper explores how digital technologies are experienced in a specific field of science, biological systematics. Email accounts were solicited from biologists who have been working with digital images of the biological specimens conventionally used in work on the classification and naming of organisms. Thematic analysis of the interviews shows that qualities of digital images were highly contextual, often defined in dialogue with their material counterparts which are also defined in fluid and contextual fashion. Discussing the use of digital specimen images involved distinctions between different forms of work and different organisms being studied and referenced the varied institutional and geographic positioning of respondents. The introduction of digital images offered the possibility of new sociotechnical configurations emerging and to some extent realised the aspirations of digitization projects to enable new forms of distributed working. This was, however, a qualified success restricted to only some aspects of the systematists’ work.
Smart technologies in the home promise efficiency and control, but this simplistic story obscures their potential to reconfigure relationships and introduce new tensions into domestic contexts. This paper explores ethnography as a method to facilitate sociological analysis of the smart technologies in the home and develop a grounded understanding of their role in lived experience. The paper assembles insights from ethnography of silence, ethnography of infrastructure, and autoethnography. While much sociological commentary stresses the dataveillance capacities of such technologies, for ethnographers it is important to remember that our role is to do justice to members’ understandings whether they relate to dataveillance or not. Ethnographers need to address the common tendency for facilitating technologies of this kind to become unspoken aspects of everyday life Autoethnography offers a route into exploring the nuanced meaning of the silences that the use of smart technologies entails and engaging with emotional dimensions of their use.
The United Kingdom Government are planning to issue guidance on sleep duration. Whilst sleep is clearly important for health, offering such guidance is not the answer. Within this commentary we put forward three arguments to support this claim: (i) sleep is liminal and beyond the limits of voluntary agency; (ii) sleep is linked to structural inequality; and (iii) sleep is multiple. The first two points are now well established. However, the third encourages a considerable break from established thinking. Recent research has highlighted that we need to move away from viewing sleep as a singular, objectively defined phenomenon, and instead position it as many different practices woven together. Sleep is situated, contingent and is enacted in multiple ways. Public health would be better served by a ground-up approach which explores good and poor sleep across these three axes: liminality, social position and ontology.
As use of the Internet has become increasingly widespread, the Internet has also become a natural site for qualitative research. New researchable populations emerge, and illuminating discussions on every conceivable topic have become accessible to researchers. The Internet also presents many challenges, however, raising the questions of how to develop ethical and achievable research projects, and how to present findings to the widest possible audience. This book focuses on the process of writing qualitative Internet research, from the construction of the initial proposal to the preparation of different types of research reports, including conventional dissertations and more innovative media forms. Covering ethnographic, interview-based, and documentary analysis, The Internet offers clear guidance on the challenges and opportunities posed by the application of these approaches to Internet settings, drawing on a wide array of published examples and rooting its advice in the established principles of qualitative research. The author emphasizes the importance of reflexivity and developing awareness of the various genres of qualitative writing, together with building research reports that are significant as mainstream social research. Although the emphasis of this book is on qualitative research, it also draws on quantitative research techniques, since the sheer wealth of data available on the Internet prompts consideration of new ways of visualizing and summarizing data. The Internet also explores initiatives by Internet researchers to make use of new media technologies for analyzing and presenting their research, and to allow for new forms of interaction with research participants and audiences.
The new social contexts formed via the Internet, and the new forms of data made available by the increasing use of diverse forms of computer mediated communication, have challenged researchers to develop approaches which do them justice. At the same time, there has been concern that established principles should be preserved, and that the connection between virtual research methods and more conventional research approaches should not be rejected out of hand. Despite a number of handbooks and textbooks published in recent years there is still a dearth of authoritative works which offer comprehensive coverage of the virtual research methods available to social researchers. In particular, there is none which thoroughly explores the full range of virtual research methods and their antecedents, and which explores the methodological and epistemological ramifications of their development. This multivolume reference collection fills this gap. The collection covers perspectives on the Internet as a social space; research models for the Internet and the skills, techniques and approaches needed to conduct research in a virtual environment; innovations in the research process and reflections on these innovations; and the ethical considerations to take into account when doing research on the Internet.
There are enduring inequalities in usage of social media, relating both to the demographic patterning of users and to differences in the kinds of use people make of these platforms. This paper presents a content analysis of representations of Twitter in three British newspapers from 2007 to 2014 aimed at exploring the potential contribution that differing journalistic practices make to sustaining the inequalities in uptake and use of social media platforms. The newspapers were selected for the contrasting composition of their readership, allowing for comparison of the portrayals of Twitter to distinct socio-demographic groups. The portrayal of Twitter was found to differ between the three newspapers analysed, with the readers of the tabloid and mid-range newspaper being presented a depiction of Twitter as a site for elite and celebrity voices and for fandom rather than a site for their own active participation or political content creation, to a greater extent than the readers of the quality paper. These results suggest that the journalistic practices distinctive to these diverse newspapers may have significant implications for the extent to which their readership are encouraged to see themselves as able to have a voice on social media: the tabloid style risks depoliticising Twitter.
This thesis explores the operationalisation of Human Rights at a grassroots level by NGOs. Specifically, it presents a comparative study of how activists in samples of NGOs in West Bengal and London framed their experiences of implementing human rights and development principles, focusing on characterisations of the deployment of human rights in programmes targeted at women beneficiaries. This thesis contributes to a growing literature on tensions between human rights as a universal ethical framework and situated experiences of social activism. It advances knowledge in the burgeoning field of cross-cultural feminism within the wider debate of social inequalities. It draws in Fricker’s work on epistemic injustice to enrich our understanding of this conversation. It examines activists’ accounts of how this abstract framework is implemented on the ground. The thesis explores how NGOs’ perceptions of local economic, cultural and social forces have influenced characterisations of their deployment of the human rights framework. This thesis analyses two linked datasets. The first is drawn from publicly accessible websites of a sample of NGOs in West Bengal and London, and was analysed using a text-mining application. The second dataset comprises interviews with activists from subsamples of NGOs in both countries. An analysis of the research materials identified commonalities underlying the activists’ accounts of their work. In this study, two taxonomies were developed through an iterative process of grounded analysis and comparison with the literature to capture the similarities and contrasts within the research materials. The first taxonomy was constructed to describe social activists’ perceptions of their ability to deploy the human rights framework. A second taxonomy was developed to describe different orientations towards the deployment of women’s human rights. These taxonomies formed analytic frameworks framed by activists’ different perceptions of the ability to engage with human rights and women’s human rights frameworks.
As they are employed in local government-owned, managed and funded institutions, local authority museum professionals experience their working lives within an organisational framework that is based on high levels of politics and administration (Lawley, 2003). Inherent to this governance model are pressures, constraints and structuring forces that affect the agency and practices of local authority museum professionals, and the makeup of their institutions. However, the literature does not sufficiently attend to the experiences of local authority museum professionals, in terms of their working lives and the distinctive environmental conditions that they operate within. This is especially the case in the contemporary context. Of the museum types, local authority museums have been the hardest hit by austerity (Museums Association, 2015a, 2017a; Tuck et al., 2015), and my research finds out about the experiences of their professionals based on the findings generated from the data of 30 semi-structured qualitative interviews. My research comprehends the interplays between structure and agency, following a trajectory from the micro to the macro, through the perceptions of the participants. It consists of the following investigative format. The first focus was on finding out about the cultures of the participants to learn about their backgrounds, which was achieved by using Bourdieu’s (1984) concept of cultural capital. Learning about their cultures helps to identify whether there was a lack of ethnic and cultural diversity in the profession, and assists in understanding more about the characteristics that underpinned and shaped the practices of the participants. Then, using DiMaggio and Powell’s (1991) concept of isomorphism, the second focus was on finding out about the structuring forces that homogenised the practices of the participants and their museums, albeit in different areas and to different degrees. Deviating away from structuration, the third focus was on the agency of the participants and their manipulation of pressures and constraints in diverse ways, which were potential areas of innovation. Moreover, the experiences of the participants are at the heart of the findings and discussions that are presented throughout my thesis. My research evidences that pressures, constraints and structuring forces, in the form of isomorphic processes (normative, mimetic and coercive), homogeneously affected the practices of the participants and their museums. These processes were caused by other professionals, institutions and organisations, along with policies and communities. On evaluation of the findings, it is concluded that isomorphism was a presence among the museums, and more broadly, local authority museums in the sector, although the findings show that homogenisation had its advantages and disadvantages, which centred on legitimacy and efficiency. Furthermore, the findings show that while the participants were highly restricted in exercising their agency, there were small signs of its presence in their construction of displays and building of community and councillor support. As they would be enduring austerity for the foreseeable future, the participants perceived that building support would help to foster the resilience and sustainability of their museums. On reflection of the findings and discussions that are presented in my thesis, suggestions about where future research and policy need to be directed are made.
Commons-Based Peer Production (CBPP) is a new model of socio-economic production in which groups of individuals cooperate with each other without a traditional hierarchical organisation to produce common and public goods, such as Wikipedia or GNU/Linux. There is a need to understand how these communities govern and organise themselves as they grow in size and complexity. Following an ethnographic approach, this thesis explores the emergence of and changes in the organisational structures and processes of Drupal: a large and global CBBP community which, over the past fifteen years, has coordinated the work of hundreds of thousands of participants to develop a technology which currently powers more than 2% of websites worldwide. Firstly, this thesis questions and studies the notion of contribution in CBPP communities, arguing that contribution should be understood as a set of meanings which are under constant negotiation between the participants according to their own internal logics of value. Following a constructivist approach, it shows the relevance played by less visible contribution activities such as the organisation of events. Secondly, this thesis explores the emergence and inner workings of the socio-technical systems which surround contributions related to the development of projects and the organisation of events. Two intertwined organisational dynamics were identified: formalisation in the organisational processes and decentralisation in decision-making. Finally, this thesis brings together the empirical data from this exploration of socio-technical systems with previous literature on self-organisation and organisation studies, to offer an account of how the organisational changes resulted in the emergence of a polycentric model of governance, in which different forms of organisation varying in their degree of organicity co-exist and influence each other.
Our current understanding of the use of online support and information among parents of people with rare syndromes is fragmented, both theoretically and methodologically. This thesis aimed to provide a more coherent picture by using Bourdieu’s concepts of capitals, habitus and fields to explore the interplay between the social differentiation of online support use and its role within the wider caring practices of parents of people with Rett syndrome. A mixed mode, mixed method approach was used. Parents were recruited through a charity’s mailing list and communication channels and through relevant online support sites. 190 parents completed a survey about Internet and online support use. Twenty of these parents took part in detailed interviews about their use of online peer support sites. Age most strongly differentiated the use of the Internet for caring-related information and support. Time-related variables (age of parent, age of child and years since diagnosis) strongly differentiated the use of online peer support and fewer years since diagnosis was associated with gaining greater benefits from online peer support. Use of online peer support in everyday caring practices was dynamic and changed in relation to alternative sources of social capital, current need and level of relevant expertise. Interviewees with adult children had lower information and support needs overall and online support sites, used predominantly by younger carers, offered them few useful ‘goods’, except keeping abreast of developments in research and treatment. Wealthier parents tended to use blogs to read and trade information. There was a suggestion that more educated interviewees accessed a range of primary sources of information while less educated parents relied upon online peer support as a primary source of information. These findings demonstrate the importance of exploring online caring and health practices within a wider social, historical and personal context.