Jane Richardson

Health-related quality of life in gout: a systematic review

Objectives. To identify the instruments that have been used to measure health-related quality of life (HRQOL) in gout and assess their clinimetric properties, determine the distribution of HRQOL in gout and identify factors associated with poor HRQOL. Methods. Medline, CINAHL, EMBASE and PsycINFO were searched from inception to October 2012. Search terms pertained to gout, health or functional status, clinimetric properties and HRQOL. Study data extraction and quality assessment were performed by two independent reviewers. Results. From 474 identified studies, 22 met the inclusion criteria. Health Assessment Questionnaire Disability Index (HAQ-DI) and Short Form 36 (SF-36) were most frequently used and highest rated due to robust construct and concurrent validity, despite high floor and ceiling effects. The Gout Impact Scale had good content validity. Gout had a greater impact on physical HRQOL compared to other domains. Both gout-specific features (attack frequency and intensity, intercritical pain and number of joints involved) and comorbid disease were associated with poor HRQOL. Evidence for objective features such as tophi and serum uric acid was less robust. Limitations of existing studies include cross-sectional design, recruitment from specialist clinic settings and frequent use of generic instruments. Conclusion. Most studies have used the generic HAQ-DI and SF-36. Gout-specific characteristics and comorbidities contribute to poor HRQOL. There is a need for a cohort study in primary care (where most patients with gout are treated) to determine which factors predict changes in HRQOL over time. This will enable those at risk of deterioration to be identified and better targeted for treatment.

Establishing the (extra)ordinary in chronic widespread pain

Sufferers of chronic illness face delegitimation of their condition and threats to their identities. One way of establishing the legitimacy of their position is for sufferers of chronic illness to emphasize the ‘ordinary’ in their accounts. Sufferers of conditions which are chronic, invisible and contested, such as chronic widespread pain, have the same, and possibly greater, need to legitimize their condition and refute allegations of ‘malingering’ or psychological instability. The article uses interviews with women with chronic widespread pain to illustrate the ways in which the invisible, subjective and everyday nature of chronic pain leads to sufferers experiencing delegitimation of their condition. It suggests that the accounts of women suffering from chronic widespread pain are constructed to portray a positive identity in the face of this experience, particularly through the emphasis on the ‘extraordinary’.

Behaviour change and social blinkers? The role of sociology in trials of self-management behaviour in chronic conditions

Individual-focused self-management interventions are one response to both an ageing society and the purported increase in chronic conditions. They tend to draw on psychological theories in self-management interventions, but over-reliance on these theories can reinforce a narrow focus on specified attitudinal and behavioural processes, omitting aspects of living with a chronic condition. While advances have been made in health behaviour change theory and practice, scant attention has been paid to the social, with the question of social context remaining under-theorised and under-explored empirically. This is particularly noticeable in trials of behaviour change interventions for self-management. The common sociological critique is that these ignore context and thus no explanation can be given as to why, for whom and under what circumstances a treatment works. Conversely, sociologists are criticised for offering no positive suggestions as to how context can be taken into account and for over-emphasising context with the risk of inhibiting innovation. This article provides an overview of these issues and provides examples of how context can be incorporated into the rigid method of trials of self-management for chronic conditions. We discuss modifications to both trial interventions and design that make constructive use of the concept of context.

Towards ethical practice in the use of archived transcripted interviews

Transcribed archived interviews are a data source which are becoming more widely used across a range of disciplines. Their use raises important ethical issues, particularly in the areas of relationships with research participants; informed consent; and confidentiality. The existing ethical guidelines that are available for social scientists or historians refer to the carrying out of interviews, but not to the secondary use of the transcripts that sometimes result from oral history or qualitative social research projects. This paper therefore questions whether the ethical relationship between interviewer and interviewee can be adopted and maintained by the reader of a transcripted interview and suggests that the ethical use of transcripted life-narratives cannot be governed by legal or contractual rules of possession, nor solely by the regulations laid down by oral history/archival organisations. The article concludes by asserting a need for social scientists and historians to develop and negotiate a shared ethical practice in the use of transcribed archived material and suggesting some approaches that may be taken.

I'd rather go and know: women's understanding and experience of DEXA scanning for osteoporosis.

Objective  To explore womens knowledge and understanding of osteoporosis and of dual energy x‐ray absorptiometer (DEXA) scans; the factors influencing their decision to have a scan and their experience of undergoing a DEXA scan.

The consequences of authentic early experience for medical students: creation of mētis

Context  Authentic early experience (AEE) describes experiences provided to new medical students to undertake ‘human contact’ to enhance learning. Although the concept of AEE is not new, and was commonplace prior to the Flexner Report of 1910, little is known about how or why meaning and knowledge are constructed through early student placements in medical, social and voluntary workplaces. Variance among settings means AEE is a collection of non‐uniform, complex educational interventions which require students to make repeated transitions between different workplaces and their university institution. The purpose of this paper is to develop theory in this context.

Twelve tips for teaching using videoconferencing

Videoconferencing is a highly flexible teaching tool. It can assist in delivery of a rapidly changing curriculum and can solve some of the problems caused by trying to deliver teaching to an audience dispersed across campuses. When well planned and delivered effectively, videoconferenced teaching sessions can be stimulating and enjoyable. An enthusiastic approach, a well-planned session, interactive teaching, use of site facilitators and a good working relationship with technical support are keys to success.

Authentic early experience in Medical Education: a socio-cultural analysis identifying important variables in learning interactions within workplaces

This paper addresses the question ‘what are the variables influencing social interactions and learning during Authentic Early Experience (AEE)?’ AEE is a complex educational intervention for new medical students. Following critique of the existing literature, multiple qualitative methods were used to create a study framework conceptually orientated to a socio-cultural perspective. Study participants were recruited from three groups at one UK medical school: students, workplace supervisors, and medical school faculty. A series of intersecting spectra identified in the data describe dyadic variables that make explicit the parameters within which social interactions are conducted in this setting. Four of the spectra describe social processes related to being in workplaces and developing the ability to manage interactions during authentic early experiences. These are: (1) legitimacy expressed through invited participation or exclusion; (2) finding a role—a spectrum from student identity to doctor mindset; (3) personal perspectives and discomfort in transition from lay to medical; and, (4) taking responsibility for ‘risk’—moving from aversion to management through graded progression of responsibility. Four further spectra describe educational consequences of social interactions. These spectra identify how the reality of learning is shaped through social interactions and are (1) generic-specific objectives, (2) parallel-integrated-learning, (3) context specific-transferable learning and (4) performing or simulating-reality. Attention to these variables is important if educators are to maximise constructive learning from AEE. Application of each of the spectra could assist workplace supervisors to maximise the positive learning potential of specific workplaces.

Ethical Issues in the Reuse of Qualitative Data: Perspectives From Literature, Practice, and Participants

In this article, we explore ethical issues in qualitative secondary analysis through a comparison of the literature with practitioner and participant perspectives. To achieve this, we integrated critical narrative review findings with data from two discussion groups: qualitative researchers and research users/consumers. In the literature, we found that theoretical debate ran parallel to practical action rather than being integrated with it. We identified an important and novel theme of relationships that was emerging from the perspectives of researchers and users. Relationships were significant with respect to trust, sharing data, transparency and clarity, anonymity, permissions, and responsibility. We provide an example of practice development that we hope will prompt researchers to re-examine the issues in their own setting. Informing the research community of research practitioner and user perspectives on ethical issues in the reuse of qualitative data is the first step toward developing mechanisms to better integrate theoretical and empirical work.

Troubling stoicism: Sociocultural influences and applications to health and illness behaviour

In light of the ambiguity of meanings attributed to the concept of stoicism we critically explore its use as a label to explain and describe health and illness behaviour, juxtaposing the often negative portrayals of contemporary stoicism against its classical and philosophical origins. By reflecting critically on the term ‘stoicism’, its application and dimensionality, we show how the term has evolved from classical to contemporary times in relation to changing context, and explore different understandings of the term across medical and health literature. We attend to sociocultural factors that are seen to influence the conceptualization of stoicism such as generational influences, gender and geographies. We make the assertion that by applying the label of ‘stoicism’ as it is known today, there is a danger of too readily accepting a term that masks particular health behaviours while missing an array of sociological factors that are important to how people deal with adversity arising from chronic health problems. We therefore encourage further questioning of this term.