About the Project
Inherited MND is rare, affecting around 5% of those with MND. This is a rapidly changing field; new genes are being discovered, and more families are learning they have a testable genetic mutation (Bäumer et al 2014). While there has been research into the overall experience of MND, the familial form is neglected.
Drawing on social science research on illness identities, social identity theory (Tajfel 1978), and biographical disruption (Bury 1982, Locock et al 2009), the project will explore the impact on families of discovering a family member has inherited MND. How do people make sense of this new identity, which may be unwanted, resisted and resented? How do affected and unaffected family members negotiate decisions about disclosure, genetic testing, family carer roles, and reproductive choices? How could support services be improved?
The study involves interviews with patients, family members and clinicians; ethnographic observations in specialist centres; online ethnography of support group interactions; and a meta-ethnographic qualitative review of studies of identity and adult-occurring inherited conditions. A key output would be resources for patients and families affected by inherited MND.
The lead supervisor has links with ‘Families for the Treatment of Hereditary MND’ (FaTHoM) initiative led by Prof Martin Turner (University of Oxford) and with the MND Association. Both are keen to help facilitate the study and disseminate outcomes. Both supervisors have a track record of research on MND and working together successfully (e.g. Mazanderani et al 2012).
Prerequisites:
- A master’s degree in a relevant social science (e.g. sociology, anthropology, social policy, science and technology studies), psychology or other relevant health discipline.
- Familiarity with health and social care systems.
- An interest in patient experience, particularly in neurological conditions.
- Relevant research methods training, especially commitment to and experience of using qualitative research methods.
The project is a part of SPRINT-MND/MS, a new Scotland-wide PhD scheme for research into motor neurone disease and multiple sclerosis. Projects, encompassing a wide range of topics including laboratory, clinical, and social sciences, are available at Aberdeen, Dundee, Edinburgh, Glasgow and St Andrews Universities. This exciting initiative provides a great opportunity for budding researchers in any field related to MND or MS to join Scotland’s network of world-leading scientists and health professionals. Find more information here:
http://www.edinburghneuroscience.ed.ac.uk/edneurophd/sprint-mndms-phd-programme
Funding Notes
Studentships are for three years and include a standard non-clinical stipend*, UK/EU fees* and an allowance for consumables and travel. The cohort of SPRINT students will also be offered opportunities to attend clinics and meet patients, undertake ‘taster’ placements in a different field, and participate in public engagement and researcher networking events.
*Clinical and/or non-UK/EU applicants are eligible to apply. However, because any shortfall in stipend or fees must be met by the supervisory team, written agreement from the supervisor must accompany the application.
References
Bäumer D., Talbot K., Turner M.R. (2014) Advances in motor neurone disease. J R Soc Med. 107(1):14-21.
Bury, M. (1982) Chronic illness as biographical disruption. Sociology of Health & Illness. 4 (2):167-182.
Locock L., Ziebland S., Dumelow C. (2009) Biographical disruption, abruption and repair in the context of motor neurone disease. Sociology of Health & Illness. 31:1043-1058.
Mazanderani, F., Powell, J., Locock, L. (2012) Being differently the same: an exploration of the mediation of identity tensions in the sharing of illness experiences, Social Science & Medicine 74(4): 546-553.
Tajfel, H. (Ed.) (1978). Differentiation between social groups: Studies in the social psychology of intergroup relations. London: Academic Press.
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