From waste product to blood, brains and narratives : developing a pluralist sociology of contributions to health research

Funded by National Institute for Health Research (NIHR) Oxford Biomedical Research CentrePeer reviewedPublisher PD

The collection of ‘quality’ umbilical cord blood for stem cell treatments:conflicts, compromises, and clinical pragmatism

Incentives have been proposed to NHS hospitals to encourage the collection of ‘quality’ umbilical UCB (UCB) to treat people with blood disorders. As UCB is collected immediately after a woman has given birth, maternity practices have come under scrutiny. Sixty-two interviews were conducted between 2009 and 2010 with those working on maternity wards, and in UCB collection and banking. Ethical approval was granted by the university institution and the NHS Research Ethics Committee. Participants perceived a conflict between acquiring a ‘quality’ UCB sample for blood disease sufferers and concerns for maternal and neonatal health. Options to overcome the conflict were compromises that demonstrated that those most powerful in the debates are those conducting maternity practices, whilst those involved in the banking of UCB have less influence perhaps as a consequence of the lower priority of ‘quality’ UCB collection in relation to maternal and neonatal health

The social life of the dead:the role of post-mortem examinations in medical student socialisation

Dissection has held a privileged position in medical education although the professional values it inculcates have been subject to intense debate. Claims vary from it generating a dehumanising level of emotional detachment, to promotion of rational and dispassionate decision-making, even to being a positive vehicle for ethical education. Social scientists have positioned dissection as a critical experience in the emotional socialisation of medical students. However, curricular revision has provoked debate about the style and quantity of anatomy teaching thus threatening this ‘rite of passage’ of medical students. Consequently, some UK medical schools do not employ dissection at all. In its place, observation of post-mortem examinations - a long established, if underutilised, practice – has re-emerged in an attempt to recoup aspects of anatomical knowledge that are arguably lost when dissection is omitted. Bodies for post-mortem examinations and bodies for dissection, however, have striking differences, meaning that post-mortem examinations and dissection cannot be considered comparable opportunities to learn anatomy. In this article, we explore the distinctions between dissection and post-mortem examinations. In particular, we focus on the absence of a discourse of consent, concerns about bodily integrity, how the body’s shifting ontology, between object and person, disrupts students’ attempts to distance themselves, and how the observation of post-mortem examinations features in the emotional socialisation of medical students

Rethinking gamete donor care:a satisfaction survey of egg and sperm donors in the UK

Objective Despite poor clinic communication and staff treatment being reported by donors, high rates of overall satisfaction are still reported in surveys. This study will evaluate the importance of communication and interaction between donors and fertility clinic staff in gamete donor care. Methods We report on 120 egg and sperm donors’ responses to a UK-wide online satisfaction survey. The survey focused on donors’ interactions with fertility clinic staff pre-, during, and post- donation. Basic cross-tabulation was performed on the data using online survey software. Textual data was read and extracts identified, which illustrated and expanded on the findings from the numerical data. Diagrammatic modeling was also utilised to analyse the textual data, with particular focus to relationships between the donors and clinic staff, the main activities within the gamete donation process, and how these activities may affect donor satisfaction with the gamete donation process. Results Donors expressed concern for the infertile couple and the resulting child; conveyed frustration at not receiving information on the expenses they could claim; felt lost in the system regarding the ease of making clinic appointments, and once made they were routinely not seen on time for these appointments. Donors also negatively commented on aftercare, the location and condition of the donation room, and information on contraception. In addition, Ovarian Hyperstimulation Syndrome was frequently reported, with these egg donors believing that clinic staff were not concerned with their physical or emotional well-being, but were instead disproportionately focused on extracting the eggs. Conclusions The multifaceted notion of donors highlights the complexity inherent to the gamete donation process, which comprises various aspects of uncertainty in the donation system, and ambiguity in the donation process. Categorising donors as Altruist, Customer, and Patient, conveys the particular importance of staff communication and treatment in donor care. These categories are not mutually exclusive however, in that an individual donor may experience more than one of these perspectives during the course of their gamete donation journey. Finally, there were a number of exemplar cases, where donors reported high satisfaction throughout, and these correlated with them being given a single point of contact at the clinic. Subject to resource constraints, we suggest that this practice should be implemented throughout clinics in the UK, so that donors have access to dedicated clinic staff who not only support them emotionally and physically throughout the gamete donation process, but also ensure that communication is open, clear, timely, and consistent

Interprofessional spanning and maintaining boundaries when supporting potential embryo donors to stem cell research

When patients undergo fertility treatment, it is likely that a surplus of embryos will be created. The existence of these surplus embryos creates responsibilities for the clinics where they are stored and for the people who own them. Since 2001, the owners of the surplus embryos in the UK have the option to donate them to be used in stem cell research (SCR). This development has generated a new population - potential embryo donors to SCR – who have unique support needs as they are neither fertility patients nor donors. However, little is known how lay and professional stakeholders associated with fertility treatment and SCR have conceptualised the support needs of potential embryo donors to SCR or have responded to the additional task once the option became available. In this paper, we draw on Gieryn’s concept of boundary-work to explore how the emergence of donating embryos to SCR has provided opportunities for embryologists, counsellors and scientists to shift, adapt or confirm their roles, knowledge base and areas of expertise. We present a thematic analysis of 21 in-depth, semi-structured interviews conducted between September 2006 and January 2007 with UK lay and professional stakeholders associated with fertility treatment, and SCR. We conclude with reflections on the implications this boundary-work has for those contemplating donating embryos to SCR, and the care they receive when making their decision. Such insights are pertinent given the current policy and practice discussions led by the National Donation Strategy Group to improve the care of donors in the UK

Balancing medical education with service in the workplace

Purpose: Finding a balance between the provision of quality individualized care and the ongoing education of junior doctors had been flagged as a concern at a large NHS teaching hospital in the north of England. In response to this, the organization introduced an intervention designed to improve educational culture by providing support to educators, leaders and clinical staff. Method: This article features themed results from eight in-depth interviews with educators, consultants and junior doctors to describe and evaluate the process and impact. Findings: Factors that contributed to a positive educational environment included: trainees and educators feeling valued, the presence of supportive leaders, and the provision of a safe space for learning. Perceived barriers included time constraints, differing motivation, and the generic format of formal education. Participants reflected on how the Wrap Around project helped improve the workplace educational culture and offered suggestions for further improvement including the provision of ongoing feedback to learners about their performance. Originality: Research aimed at recognising and resolving the perceived tensions between the priorities of education and healthcare delivery has been flagged as a gap in the literature. We argue that developing and enhancing collaborative leadership and educational culture within an organization can reduce these tensions for those working on the front line. Future work should focus on addressing the perceived distinction between the two within services.<br/

Online interviewing with interpreters in humanitarian contexts

Recognising that one way to address the logistical and safety considerations of research conducted in humanitarian emergencies is to use internet communication technologies to facilitate interviews online, this article explores some practical and methodological considerations inherent to qualitative online interviewing. Method: Reflections from a case study of a multi-site research project conducted in post-conflict countries are presented. Synchronous online cross-language qualitative interviews were conducted in one country. Although only a small proportion of interviews were conducted online (six out of 35), it remains important to critically consider the impact upon data produced in this way. Results: A range of practical and methodological considerations are discussed, illustrated with examples. Results suggest that whilst online interviewing has methodological and ethical potential and versatility, there are inherent practical challenges in settings with poor internet and electricity infrastructure. Notable methodological limitations include barriers to building rapport due to partial visual and non-visual cues, and difficulties interpreting pauses or silences. Conclusions: Drawing upon experiences in this case study, strategies for managing the practical and methodological limitations of online interviewing are suggested, alongside recommendations for supporting future research practice. These are intended to act as a springboard for further reflection, and operate alongside other conceptual frameworks for online interviewing

Mediated research encounters:methodological considerations in cross-language qualitative interviews

Given increasing globalisation, the continuing prevalence of emergencies, and the importance of rigorous research to ensure the mental health needs of populations exposed to emergencies are effectively met, cross-language research will continue to arise. Drawing upon the lead author’s experience of conducting a cross-language qualitative study in three post-conflict settings in South Asia, this article discusses methodological considerations raised when interviewing with interpreters. These include considering interpreter positionality and matching; the approach to cross-language mediation during interviews; and assessing the quality of interpreter facilitated interviews. Drawing upon approaches taken in this study, the important choices researchers face about how these are managed are examined, considering the roles of researcher and interpreter positionality, the research context, and the epistemological underpinnings of the research. The discussion further illuminates the interrelated methodological, practical and ethical considerations for other researchers embarking upon similar research

Evaluating the Effects of SARS-CoV-2 Spike Mutation D614G on Transmissibility and Pathogenicity.

Global dispersal and increasing frequency of the SARS-CoV-2 spike protein variant D614G are suggestive of a selective advantage but may also be due to a random founder effect. We investigate the hypothesis for positive selection of spike D614G in the United Kingdom using more than 25,000 whole genome SARS-CoV-2 sequences. Despite the availability of a large dataset, well represented by both spike 614 variants, not all approaches showed a conclusive signal of positive selection. Population genetic analysis indicates that 614G increases in frequency relative to 614D in a manner consistent with a selective advantage. We do not find any indication that patients infected with the spike 614G variant have higher COVID-19 mortality or clinical severity, but 614G is associated with higher viral load and younger age of patients. Significant differences in growth and size of 614G phylogenetic clusters indicate a need for continued study of this variant