ESR 15
Project Title  Online and offline stigma for FD in the general population: occurrence and interventions
Host institution  University of Edinburgh, UK
Supervision   Prof. Jon Stone
Required qualifications  
Duration   36 months

Objectives: 

To main goal of this project is to develop and test materials to overcome stigma and negative health care interactions for patients with FD characterized by functional neurological symptoms. This ESR will first develop a questionnaire to study stigma and negative healthcare interactions in FD patients, which will be distributed across specialized centres and patients organizations across Europe. A qualitative thematic content analyses of public forums will be performed to study online stigma. The results will inform the production of an interactive anti-stigma video in a participatory design. The video will be provided online and evaluated with regard to acceptability and change in stereotypical beliefs as assessed using the methods developed by ESR13.

Expected Results: 

  1. Data on frequency and nature of negative health care interactions for FD patients and doctors across multicentre sites in Europe
  2. Data on key themes of stigma experienced by patients online – from doctors and from other patients
  3. Patient co-designed interactive video and pilot results of initial testing

Planned secondments and research visits: 

  1. University Medical Center Groningen (UMCG), Departments of Neurology (Prof. de Koning-Tijssen), Groningen, Netherlands; Start: Month 12; Dura-tion: 4 months; Aim: learn about stigma research in the field of FD
  2. Dimence mental health care (Dimence Group), Specialist Centre for Functional symptoms & Somatic symptom disorders (Dr. Tak), University of Groningen, Groningen, Netherlands; Start: Month 19; Duration: 4 months; Aim: develop and distribute a questionnaire on negative health care inter-actions
  3. Grasshopper Films (GbR), Tübingen, Germany (Mrs. Ross); Start: Month 26; Duration: 1 month; Aim: produce an interactive video on stigma