Poetry and Multiple Sclerosis Study (Version 1 28/08/2019)
Research type
Research Study
Full title
Poetry and Multiple Sclerosis Study: how may poems written by multiple sclerosis patients affect communication with medical practitioners?
IRAS ID
268252
Contact name
Georgi Gill
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
1 years, 10 months, 1 days
Research summary
This research intends to explore how individuals with Multiple Sclerosis (MS), including the researcher, participate in dialogues with their medical caregivers, and how they may influence these dialogues through the introduction of patient-written poetry. The study will address the following research question:
• How does writing poetry affect communication between individuals with MS and their medical teams and others?
and the following sub-questions:
• How does writing poetry affect the relationship of individuals with MS with their ill bodies?
• How may increasing the participant role in arts-based methods of data creation de-centre the researcher’s voice?6-10 participants, who have MS and are outpatients at the Anne Rowling Regenerative Neurology Clinic (ARRNC) will be recruited by nurses and consultants at the clinic. (These are subsequently referred to as 'patient-participants' to distinguish from 'clinical staff participants'.) They will take part in initial interviews exploring their patterns of communication about their illness experience.
The researcher will facilitate six poetry writing workshops, where patient-participants can explore and express their experiences through writing poems. The researcher will also write her own sequence of poems exploring her life with MS.
The number and frequency of the workshops has been designed so that the regular group meetings will allow a supportive environment to develop. Additionally, if patient-participants miss one or more sessions, they should still have sufficient opportunities to make a meaningful contribution to the study.
Completed poems will be shared with members of the ARRNC clinical team. In order to assess the impact of the poetry writing experience, the researcher will interview patient-participants following the poem sharing event. She will also recruit 'clinical staff participants' from ARRNC to explore their perspective of the project's impact through interviews.
By increasing patient-participants' voice and their role in data writing, the study also intends to trouble issues of authorship and power in research.
REC name
East of Scotland Research Ethics Service REC 1
REC reference
19/ES/0111
Date of REC Opinion
28 Oct 2019
REC opinion
Further Information Favourable Opinion