|PROJECT TITLE||EXPLORING EXPERIENCES OF THE ILLNESS, ITS CARE AND ACHIEVING FUNCTION FOLLOWING GUILLAIN-BARRÉ SYNDROME (GAIN)|
|Funding body||Guillain-Barré and Associated Inflammatory Neuropathies (GAIN)|
|Team/consortium||University of Lincoln:
|Overarching aim||The overarching aim is to explore the experiences and return to function of people with Guillain-Barré Syndrome.|
|Objectives||Guillain Barré Syndrome (GBS) is the commonest form of acute polyneuropathy with an incidence of 1-2/100,000 per year. Chronic inflammatory demyelinating poly(radiculo)neuropathy (CIDP) is a closely related condition, with a longer duration of onset, which affects 0.5-1 people per 100,000 per year. This project seeks to investigate patients’ experience of care, particularly focussing on the period following discharge from hospital and return to the community, from a physical, psychological and social perspective. To review patients’ experiences of GBS and CIDP at diagnosis, discharge and during recovery by conducting a systematic review and thematic metasynthesis of qualitative studies of patients’ experiences of GBS and CIDP.
|Methods||We will use a mixed methods sequential design with the following component work streams:
|Outcomes||Our study has helped the GAIN charity and other stakeholders to understand how to support the return to function of people with Guillain-Barré Syndrome and Chronic inflammatory demyelinating poly(radiculo)neuropathy (CIDP) .|
|Outputs||Peer reviewed research, conference presentations, web page, blogs and patient/public information.
Akanuwe J, Laparidou D, Curtis F, Jackson J, Hodgson T, Siriwardena AN (2020). Exploring the experiences of having Guillain-Barré Syndrome: a qualitative interview study. Health Expectations 23:1338–1349..
Laparidou D, Curtis F, Akanuwe J, Jackson J, Hodgson TL, Siriwardena AN (2021). Patients’ experiences and perceptions of Guillain-Barré syndrome: a systematic review and meta-synthesis of qualitative research. PLOS ONE 16(2): e0245826.
|Impact||The research was designed to support GAIN’s aim of providing support and advice to meet the needs of people with GBS. The validated survey instrument developed will be designed to facilitate repeated surveys of people with GBS and CIPD in future years.|