Research Culture Seminar: Practicalities of Researching Inequality
- Date: Wednesday 1 May 2019, 12:00 – 13:30
- Location: 12.21/25 Social Sciences Building
- Type: Seminars and lectures
- Cost: Free
Join us for the penultimate Research Culture Seminar of the semester, with two presentations exploring the practicalities of researching inequality.
Abstracts and speakers
Non-participation and disengagement in personalised medicine: patients' accounts and methodological reflection
Speakers: Dr Choon Key Chekar and Dr Julia Swallow, School of Sociology and Social Policy
The participatory turn in healthcare encourages patients’ and the public’s engagement with research and trials, so, in turn, has the potential to exclude rich accounts of non-participation and disengagement. Drawing on an ethnographic study of cancer patienthood in the genomics era in the UK, we explore non-participation, rejection, exclusion and reservations concerning genomic medicine in the public sphere as expressed by a range of social actors and groups. We capture the particular social and cultural contexts in which disengagement and resistance are generated. Refusal or inabilities to engage with genomic medicine can result from contested priorities, such as health equality or preventive medicine and a commitment to other forms of care. Not every patient can or wants to craft their own treatment pathways, and we reflect on what it means to opt-out, be excluded or feel left behind by ’personalised’ forms of care. We argue that these practices present an important counterpoint to the dominant tropes of personalisation as enhanced care by virtue of more precise health information.
We suggest that healthcare practices in the genomic era involve other kinds of care and personalisation, which need to be incorporated into scholarly engagement with biomedical innovation. We also reflect on the extent to which our research methodology and ethnographic practice have contributed to these inclusions/exclusions and silencing of particular voices, experiences and encounters in our research as discussed in relation to the wider context and constraints of the NHS ethical review process in the UK.
'We seem to be forgotten as adults': A digital ethnography of ageing and access to healthcare for women with Cerebral Palsy
Speaker: Dr Sonali Shah, School of Nursing, University of Birmingham
Giving women with Cerebral Palsy (CP) a platform to ‘speak for themselves’, in relation to health and healthcare, provides health professionals with effective resources to improve treatment for this growing adult patient community whose experiences have not received attention in health discourse or services. This paper first explores the impact of ageing with Cerebral Palsy for women, drawing on Feminist Disability Theory to address the research limitations of feminist materialism and disability theory, which have been criticised for excluding the lived experiences of disabled women. It goes back in time, reviewing some medical history and the discoverers of CP, before moving forward again to show how Facebook can be a useful tool to generate digital ethnographies and provide women with CP with an accessible, empowering and supportive platform for them to speak for themselves in research that affects their lives. I present some of their stories here, in relation to embodied and lifestyle effects of ageing with CP and experiences of healthcare, particularly reproductive and sexual health. I also discuss how my role as a disabled woman researcher is beneficial for doing such research.
There is no need to register for this event - please just turn up on the day. Please note there is limited capacity in the seminar room and spaces will be available on a first-come first-served basis.
Research Culture Seminar Series
These seminars, organised by the School of Sociology and Social Policy (SSP), generally take place every Wednesday in term time, from 12 - 1.30pm in Room 12.21/12.25 on Level 12 of the Social Sciences Building. Please check back on our online event listings for details of future seminars. Details are also emailed out to current postgraduate students, researchers and staff.
If you have any enquiries about this seminar series, please contact Tanisa at T.Gunesekera@leeds.ac.uk with the subject "Enquiry: Research Culture Seminar Series".