[show abstract][hide abstract] ABSTRACT: Venoplasty has been proposed, alongside the theory of chronic cerebrospinal venous insufficiency (CCSVI), as a treatment for multiple sclerosis (MS). Despite concerns about its efficacy and safety, thousands of patients have undergone the procedure. This paper analyses YouTube videos where patients have shared their treatment experiences.
Content analysis on the 100 most viewed videos from over 4000 identified in a search for 'CCSVI', and qualitative thematic analysis on popular 'channels' demonstrating patients' experiences.
Videos adopt an overwhelmingly positive stance towards CCSVI; many were uploaded by patients and present pre- and/or post-treatment experiences. Patients demonstrate rather than merely describe their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combine medical terminology and tests with personal experiences of living with MS.
Social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of 'evidence' built on a hybrid of personal experience and medical knowledge.
Healthcare practitioners need to engage with new digital forms of content, including online social media. Instead of disregarding sources not considered 'evidence-based', practitioners should enhance their understanding of what 'experiential-evidence' is deemed significant to patients, particularly in contested areas of healthcare.
Patient Education and Counseling 07/2013; · 2.37 Impact Factor
[show abstract][hide abstract] ABSTRACT: Illness narratives play a central role in social studies of health and illness, serving as both a key theoretical focus and a popular research method. Despite this, relatively little work has gone into conceptualising how and why illness narratives - be they in books, websites, television or other media - are commodified in contemporary healthcare and its social environment; namely, how distinctive forms of value are generated in the production, circulation, use and exchange of illness narratives. In this article we propose the notion of biographical value as a first step towards conceptualising the values attributed to illness narratives in this context. Based on a secondary analysis of 37 interviews with people affected by 15 different health conditions in the UK (all of whom have shared their illness experiences across various media) and drawing on understandings of value in research on the bioeconomy and the concept of biovalue in particular, we sketch out how epistemic, ethical and economic forms of value converge and co-constitute each other in the notion of biographical value and in broader economies of illness experiences.
Sociology of Health & Illness 04/2013; · 1.88 Impact Factor
[show abstract][hide abstract] ABSTRACT: This study describes how the level of graphical realism required in a virtual social simulation setting can be therapeutically useful in reducing job interview anxiety through exposure. We developed a virtual job interview simulation at a university career service to help student populations faced with the prospect of their first job interview. The virtual job interview simulation can deliver a realistic mock job interview within a high-quality immersive system that is similar to professional virtual reality (VR) systems. We conducted two experimental studies with a common theme: the role of graphical reality of the virtual interviewer and the immersive visual display in the virtual job interview simulation. The results are presented in this study based on a psycho-physiological approach, revealing variation in the distribution of participants′ anxiety state across various VR conditions. The overall conclusion of this study is that the sense of anxiety is less correlated to the graphical realism in VR environment even though the more graphically detailed the virtual human was, the more it provoked a sense of presence. In addition, at least some degree of physical immersion is needed to maintain anxiety levels over the course of VR exposure.
International Journal of Human-Computer Studies 01/2013; 71(10):978–987. · 1.42 Impact Factor
[show abstract][hide abstract] ABSTRACT: To investigate types of evidence used by healthcare commissioners when making decisions and whether decisions were influenced by commissioners' experience, personal characteristics or role at work.
Cross-sectional survey of 345 National Health Service (NHS) staff members.
The study was conducted across 11 English Primary Care Trusts between 2010 and 2011.
A total of 440 staff involved in commissioning decisions and employed at NHS band 7 or above were invited to participate in the study. Of those, 345 (78%) completed all or a part of the survey.
Participants were asked to rate how important different sources of evidence (empirical or practical) were in a recent decision that had been made. Backwards stepwise logistic regression analyses were undertaken to assess the contributions of age, gender and professional background, as well as the years of experience in NHS commissioning, pay grade and work role.
The extent to which empirical evidence was used for commissioning decisions in the NHS varied according to the professional background. Only 50% of respondents stated that clinical guidelines and cost-effectiveness evidence were important for healthcare decisions. Respondents were more likely to report use of empirical evidence if they worked in Public Health in comparison to other departments (p<0.0005, commissioning and contracts OR 0.32, 95%CI 0.18 to 0.57, finance OR 0.19, 95%CI 0.05 to 0.78, other departments OR 0.35, 95%CI 0.17 to 0.71) or if they were female (OR 1.8 95% CI 1.01 to 3.1) rather than male. Respondents were more likely to report use of practical evidence if they were more senior within the organisation (pay grade 8b or higher OR 2.7, 95%CI 1.4 to 5.3, p=0.004 in comparison to lower pay grades).
Those trained in Public Health appeared more likely to use external empirical evidence while those at higher pay scales were more likely to use practical evidence when making commissioning decisions. Clearly, National Institute for Clinical Excellence (NICE) guidance and government publications (eg, National Service Frameworks) are important for decision-making, but practical sources of evidence such as local intelligence, benchmarking data and expert advice are also influential. New Clinical Commissioning Groups will need a variety of different evidence sources and expert involvement to ensure that effective decisions are made for their populations.
[show abstract][hide abstract] ABSTRACT: To explore the use of metaphoric language to convey emotion in interviews with people affected by motor neurone disease, a progressive neurological condition that sits between chronic and terminal illness.
Secondary analysis of 46 interviews with people affected by motor neurone disease in the United Kingdom (35 individuals with the condition, 11 carers).
Metaphor and figurative language was used to communicate the intensely emotional experiences of being diagnosed with and living with motor neurone disease. We focus on three pervasive themes that were threaded throughout the interviews: battling and fighting; the self under attack and journeying through a physical and emotional landscape.
This secondary analysis of qualitative research interviews enriches our understanding of the articulation of emotion in motor neurone disease and adds to the literature on metaphor in chronic illness. Of particular interest is how the metaphors used contrasted with other conditions in the relative absence of metaphors of 'fighting' the disease. Furthermore, we analyse the ways in which participants used metaphors to give voice to emotions that are extremely difficult to articulate in 'literal' language, and how, in doing so, they blurred the distinction between 'physical' symptoms and 'emotional' states. Sensitivity to metaphors may help professionals communicate with people affected by motor neurone disease.
[show abstract][hide abstract] ABSTRACT: The sharing of experiences between patients has become increasingly privileged as a source of knowledge and support in contemporary healthcare. Despite this, relatively little is known about the processes whereby people's experiences become, or fail to become, valued as sources of health-related knowledge in different contexts. Through a secondary analysis of 87 interviews conducted between 2006 and 2008 in the UK with people affected by motor neurone disease (46 interviews) and Parkinson's disease (41 interviews), we explore the identity work involved in turning other people's experiences into 'experiential knowledge' that can be shared between patients. Of particular interest is how the turning of others' experiences into knowledge is presupposed by negotiating a particular type of identity tension - what, drawing on the work of Paul Ricoeur (2003) on metaphor, we refer to as 'being differently the same'. We examine the way in which people living with motor neurone disease and Parkinson's disease spoke of managing this tension as part of the process of accessing and valuing other patients' experiences, both epistemologically and emotionally. Instead of treating others' experiences as a pre-given source of knowledge, we emphasise how experience comes to be embodied and articulated through different media - bodies, speech, text, and images. Moreover, we suggest that paying closer attention to these media provides opportunities for enhancing our understanding of how people with different chronic and/or terminal illnesses use or do not use different forms of peer support - and in particular online ones - as a source of health-related experiential knowledge. Some of the implications of this are discussed in the specific context of people diagnosed with incurable neurodegenerative conditions characterised by visible physical deterioration and associated emotional distress.
Social Science [?] Medicine 02/2012; 74(4):546-53. · 2.73 Impact Factor
[show abstract][hide abstract] ABSTRACT: We explore peer-to-peer discussions which took place in a UK-based diabetes 'Virtual Clinic' online community. In particular, we seek to understand the rhetorical nature and content of exchanges over a period of six months from the community's inception. Data were captured weekly and analysis based on thematic discourse analysis. Two key issues emerged regarding how the community shaped the nature of the discussion forum. First, the identity of the forum was established, and boundaries drawn about what was, and was not, acceptable. Second, participants sought to present themselves as reliable and authoritative sources of information. Internet discussion communities are shaped in important ways early on by the community of users, including how the character and focus of discussion is formed, and how both information and users can be constructed as authoritative and reliable.
Health 11/2011; 16(4):347-65. · 2.10 Impact Factor
[show abstract][hide abstract] ABSTRACT: Examine the effectiveness and impacts of the networked communication technologies used by health care professionals for the treatment of adolescents/young adults with mental health disorders.
Nine electronic databases were searched. Quantitative and qualitative study designs were included, technologies were described and a narrative synthesis of all included studies was undertaken.
20,925 papers were identified from which 12 interventions met the inclusion criteria. Three categories of networked communication were identified: email and/or web-based electronic diary (n=6); videoconference (n=5); and virtual reality (n=1). Three studies reported statistically significant improvements in symptoms post intervention; all involved email communication. Patients were willing to use networked communication in routine care in nine studies.
Networked communication technologies can increase the opportunity for communication between patient and health care professionals. Limited improvements in quality of life and continuity of care for patients were reported. Patients and health care professionals expressed some satisfaction with technologies. Further research exploring concerns over privacy and security is needed.
Networked communication technologies have the potential to be a useful addition to mental health services delivery, however the impact and effectiveness of these technologies is inconclusive.
Patient Education and Counseling 01/2011; 85(2):e108-19. · 2.37 Impact Factor
[show abstract][hide abstract] ABSTRACT: Research has investigated whether communication technologies (e.g. mobile telephony, forums, email) can be used to transfer digital information between healthcare professionals and young people who live with diabetes. The systematic review evaluates the effectiveness and impact of these technologies on communication.
Nine electronic databases were searched. Technologies were described and a narrative synthesis of all studies was undertaken.
Of 20,925 publications identified, 19 met the inclusion criteria, with 18 technologies assessed. Five categories of communication technologies were identified: video-and tele-conferencing (n = 2); mobile telephony (n = 3); telephone support (n = 3); novel electronic communication devices for transferring clinical information (n = 10); and web-based discussion boards (n = 1). Ten studies showed a positive improvement in HbA1c following the intervention with four studies reporting detrimental increases in HbA1c levels. In fifteen studies communication technologies increased the frequency of contact between patient and healthcare professional. Findings were inconsistent of an association between improvements in HbA1c and increased contact. Limited evidence was available concerning behavioural and care coordination outcomes, although improvement in quality of life, patient-caregiver interaction, self-care and metabolic transmission were reported for some communication technologies.
The breadth of study design and types of technologies reported make the magnitude of benefit and their effects on health difficult to determine. While communication technologies may increase the frequency of contact between patient and health care professional, it remains unclear whether this results in improved outcomes and is often the basis of the intervention itself. Further research is needed to explore the effectiveness and cost effectiveness of increasing the use of communication technologies between young people and healthcare professionals.
[show abstract][hide abstract] ABSTRACT: The paper aims to take a reflective stance on the relationship between policy/evidence and practice, which, the authors argue, is conceptually under-developed. The paper aims to show that current research perspectives fail to frame evidence and policy in relation to practice.
A qualitative study was conducted in the English NHS in four Primary Care Trusts (PCTs). Seventy-five observations of meetings and 52 semi-structured interviews were completed. The approach to data analysis was to explore and reconstruct narratives of PCT managers' real practices.
The exploratory findings are presented through two kinds of narratives. The first narrative vividly illustrates the significance of the active involvement, skills and creativity of health care practitioners for policy implementation. The second narrative elucidates how problems of collaboration among different experts in PCTs might emerge and affect evidence utilisation in practice.
The findings exemplify that policies are made workable in practice and, hence, policy makers may also need to be mindful of practical intricacies and conceive policy implementation as an iterative process.
The contribution of this paper lies in offering an alternative and important perspective to the debate of utilisation of policy/evidence in health care management and in advancing existing understanding of health care management practice. The paper's rich empirical examples demonstrate some important dimensions of the complexity of practice.
Journal of Health Organisation and Management 01/2011; 25(3):298-314.
[show abstract][hide abstract] ABSTRACT: Dementia is one of the greatest contemporary health and social care challenges, and novel approaches to the care of its sufferers are needed. New information and communication technologies (ICT) have the potential to assist those caring for people with dementia, through access to networked information and support, tracking and surveillance. This article reports the views about such new technologies of 34 carers of people with dementia. We also held a group discussion with nine carers for respondent validation. The carers' actual use of new ICT was limited, although they thought a gradual increase in the use of networked technology in dementia care was inevitable but would bypass some carers who saw themselves as too old. Carers expressed a general enthusiasm for the benefits of ICT, but usually not for themselves, and they identified several key challenges including: establishing an appropriate balance between, on the one hand, privacy and autonomy and, on the other: maximising safety; establishing responsibility for and ownership of the equipment and who bears the costs; the possibility that technological help would mean a loss of valued personal contact; and the possibility that technology would substitute for existing services rather than be complementary. For carers and dementia sufferers to be supported, the expanding use of these technologies should be accompanied by intensive debate of the associated issues.
Ageing and Society 07/2010; 30(06):1073 - 1088. · 1.16 Impact Factor
[show abstract][hide abstract] ABSTRACT: Women are actively encouraged to educate themselves about pregnancy from formal sources (e.g., information leaflets, antenatal classes, books). In addition, informal stories of pregnancy and birth are routinely told between women. However, increased prenatal testing means that more fetuses are diagnosed with abnormalities, shifting the information requirements during pregnancy. Traditional sources of information cannot cover all possible outcomes, and the Internet is beginning to fill this gap. In this article, we draw from interviews about experiences of antenatal screening and pregnancy to explore how the Internet provides a unique resource for problematic pregnancies. It allows access to information about rarer conditions beyond standard pregnancy texts, as well as personal narratives about conditions. Learning how others have coped or are coping in similar situations can help alleviate feelings of isolation, and also places women back in a familiar territory of shared pregnancy narratives.
Qualitative Health Research 10/2009; 19(10):1476-84. · 2.19 Impact Factor
[show abstract][hide abstract] ABSTRACT: Background Use of the Internet for health information by patients is growing, and there have been diverse responses to this both within the research community and the medical and health-related professions. The use of Internet discussion boards are one way that people living with long-term conditions can interact with their peers and offer and seek advice, support and information. We report patient perspectives on using a discussion board within a wider pilot study of an Internet-based self-management system for diabetes.Design Qualitative data was gathered during three stages of developing and piloting the wider self-management system. These are: (1) patient focus groups as part of a stakeholder consultation; (2) a pre-test session and focus group; and 3. a 6-month pilot study including follow-up individual interviews.Results Three main themes were identified within participants’ perspectives on Internet discussion boards. First, a focus on the importance and value of peer support to these patients. Secondly, participants’ awareness of the need to evaluate the information posted by others in light of their own circumstances. Thirdly, the value placed upon the experiential knowledge of others living with the same condition.Conclusions Many people living with long-term conditions would like to be in contact with their peers, and Internet discussion boards represent a cost-effective and interactive way of achieving this. Within the context of diabetes, the knowledge and expertise accumulated over many years of self-management is central to participants’ self-reported ability to evaluate information posted and make decisions on its possible use.
Health expectations: an international journal of public participation in health care and health policy 08/2009; 12(3):313 - 320. · 1.80 Impact Factor
[show abstract][hide abstract] ABSTRACT: The motivations of clinicians to participate in clinical trials have been little studied. This project explored the potential role of payment for participation in publicly funded clinical trials in the UK. The aims were to review relevant guidelines and to collate and analyse views of clinical trialists on the role of payments and other factors that motivated clinicians to join clinical trials.
Review of guidelines governing payments to clinicians for recruitment to trials. Semi-structured interviews with a range of NHS clinical trial leaders, analysed using qualitative methods.
While UK guidelines had little to say specifically on payments linked to recruitment, all payments have become highly regulated and increasingly transparent. Interview participants believed that expenses arising from research should be covered. Payments in excess of expenses were seen as likely to increase participation but with the risk of reducing quality. Motivations such as interest in the topic, the scope for patients to benefit and intellectual curiosity were considered more important. Barriers to involvement included bureaucracy and lack of time.
Limited scope exists for paying clinicians over-and-above the cost of their time to be involved in research. Most trialists favour full payment of all expenses related to research.
Payment of clinicians beyond expenses is perceived to be a less important motivating factor than researching important, salient questions, and facilitating research by reducing bureaucracy and delay.
[show abstract][hide abstract] ABSTRACT: We developed a virtual clinic to assist patients who use insulin pumps in the management of their diabetes. The virtual clinic offered access to information, communication with health professionals and interaction with peers. Seventeen patients were recruited from three hospital clinics. Participants completed questionnaires before and after using the clinic for a six-month period. Usage was initially high but then declined. In the first two months 1691 page-views were recorded, but in the final two months only 355 page-views were registered. Users found participation reassuring. They rated peer interaction as the most desirable and the most useful of the features available. Using an Internet-based clinic to support the self-management of diabetes is feasible and acceptable to patients.
Journal of telemedicine and telecare 02/2009; 15(3):150-2. · 0.92 Impact Factor
[show abstract][hide abstract] ABSTRACT: Internet-based interventions to assist in diabetes management have the potential to provide patients with the information and support they need to become effective self-managers.
To assess the feasibility, acceptability, and effectiveness of an Internet-based virtual clinic designed to facilitate self-management in patients who used insulin pumps to manage their diabetes.
For a period of 6 months, 17 patients joined the virtual clinic. The system allowed patients to communicate with health professionals, interact with peers and access information. HbA1c, quality of life, and self-efficacy were monitored at baseline and after 6 months. Questionnaires and qualitative interviews examined patient experiences.
Participants found the virtual clinic easy to use and positively rated its design. Peer support was the most valued aspect and the discussion boards the most used component. All participants highly rated the virtual clinic in terms of improving communication with peers, but few agreed it had improved communication with health care professionals. No significant improvements in physiological and psychological measurements were found. Regarding HbA1c measurements, there was no significant difference found between the pre- and post-test results (P = .53). Mean ADDQoL scores at baseline were -2.1 (SD 1.1, range -3.4 to -0.5) compared to -2.0 (SD 1.2, range, -4.6 to -0.4) post-test (n = 12), (P = .62). Surprisingly, patients' confidence in their ability to perform self-care tasks was found to be significantly reduced from baseline to follow up (P = .045).
An Internet-based system to aid the management of diabetes appears feasible and well accepted by patients. The pilot study did not identify evidence of an impact on improving quality of life or self-efficacy in patients who used insulin pump therapy.
Journal of Medical Internet Research 01/2009; 11(1):e10. · 3.77 Impact Factor
[show abstract][hide abstract] ABSTRACT: Self-care is a way of helping the health service to manage the growth in long-term chronic conditions. We developed an Internet-based self-management tool for diabetes following detailed consultations with patients. The Virtual Clinic allows a patient to communicate with their health professionals, find information about their condition and share support and advice with others through peer-to-peer discussions. We conducted a test of the Virtual Clinic with five patients prior to the start of a six-month pilot study to evaluate its feasibility, acceptability and effectiveness. The test session involved an interactive computer-based element followed by a focus group to gather feedback. All five patients were positive about the Virtual Clinic. A user-centred approach to developing an Internet intervention is important to ensure that it will meet patients' needs and that they will be enthusiastic about using it.
Journal of Telemedicine and Telecare 02/2008; 14(3):114-6. · 1.47 Impact Factor
[show abstract][hide abstract] ABSTRACT: The development of the Internet has created new opportunities for health care provision, including its use as a tool to aid the self-management of chronic conditions. We studied stakeholder reactions to an Internet-based "virtual clinic," which would allow people with diabetes to communicate with their health care providers, find information about their condition, and share information and support with other users.
The aim of the study was to present the results of a detailed consultation with a variety of stakeholder groups in order to identify what they regard as the desirable, important, and feasible characteristics of an Internet-based intervention to aid diabetes self-management.
Three focus groups were conducted with 12 people with type 1 diabetes who used insulin pumps. Participants were recruited through a local diabetes clinic. One-on-one interviews were conducted with 5 health care professionals from the same clinic (2 doctors, 2 nurses, 1 dietitian) and with 1 representative of an insulin pump company. We gathered patient consensus via email on the important and useful features of Internet-based systems used for other chronic conditions (asthma, epilepsy, myalgic encephalopathy, mental health problems). A workshop to gather expert consensus on the use of information technology to improve the care of young people with diabetes was organized.
Stakeholder groups identified the following important characteristics of an Internet-based virtual clinic: being grounded on personal needs rather than only providing general information; having the facility to communicate with, and learn from, peers; providing information on the latest developments and news in diabetes; being quick and easy to use. This paper discusses these characteristics in light of a review of the relevant literature. The development of a virtual clinic for diabetes that embodies these principles, and that is based on self-efficacy theory, is described.
Involvement of stakeholders is vital early in the development of a complex intervention. Stakeholders have clear and relevant views on what a virtual clinic system should provide, and these views can be captured and synthesized with relative ease. This work has led to the design of a system that is able to meet user needs and is currently being evaluated in a pilot study.
Journal of Medical Internet Research 02/2007; 9(3):e23. · 3.77 Impact Factor
[show abstract][hide abstract] ABSTRACT: The internet is an increasingly important source of mental health-related information, and has the potential to be harnessed as a tool to support self-care and informed decision-making. Yet little is known about the motivations and attitudes of users. We therefore undertook a qualitative interview study with a purposive sample of mental health service users with internet experience, to explore issues with respect to mental health-related internet use. One of the prime motivations for online mental health seekers was to find experiential information from other people with similar problems. This information allowed users to know they were not alone, and to instill hope that others in the same situation had recovered. Benefits of the internet as an information source included convenience, privacy and anonymity. Problems related more to misuse of the internet rather than concerns over inaccuracy. Such qualitative work is important in an emerging research area to understand internet use better.
Studies in health technology and informatics 02/2007; 129(Pt 2):1112-6.
[show abstract][hide abstract] ABSTRACT: Despite the widespread proliferation of consumer health information provision, little is known about information needs or information-seeking behaviour in mental health. A qualitative study was therefore undertaken to explore these issues for mental health service users.
In-depth interview study with purposive sample of 36 men and women with experience of mental health problems.
Four main themes were identified. A general lack of information was equated with a lack of respect. People undertook their own research into their condition, and recognized the challenge to professionals. Stigma was widespread and inhibited information seeking. There was a desire for an explanation of mental health problems in physical terms. People particularly valued hearing other people's experience of mental health problems, for reasons of universality, instillation of hope, and understanding and empathy.
The findings provide support for a more equal partnership between patients and professionals. Information providers and health practitioners should take account of the value of other people's experience as an information source.
Health Expectations 01/2007; 9(4):359-65. · 2.11 Impact Factor