Exploring experiences of the illness, its care and achieving function following Guillain-Barré syndrome (GAIN)

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)
Total funding	£35,745
Team	Professor Niro Siriwardena, CaHRU Dr Joseph Akanuwe, CaHRU Despina Laparidou, CaHRU Dr Vanessa Botan, CaHRU Dr Zahid Asghar, CaHRU Dr Jennifer Jackson, Lincoln International Business School (LIBS) Prof Tim Hodgson, School of Psychology Dr Ffion Curtis, Centre for Ethnic Health Research, University of Leicester
Team/consortium	University of Lincoln: CaHRU Lincoln International Business School (LIBS) School of Psychology University of Leicester
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 sought 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. We sought: 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. To explore experiences particularly focussing on the period post-discharge from hospital and return to the community, of people living in the United Kingdom and Republic of Ireland who have had GBS and CIDP, from physical, psychological (cognitive and emotional) and social, including occupational (e.g., job stability and security, financial difficulties, reduced work capacity), perspectives using qualitative (individual or focus group) interviews to understand health and social care needs, facilitators and barriers to recovery and return to function. To develop, validate and administer a questionnaire survey to elicit the range of experiences, health and social care needs, and facilitators and barriers to recovery and return to function of people with GBS and CIDP resident in the United Kingdom and Republic of Ireland. To integrate and report on findings from 1-3 above and to report on these.
Methods	We used a mixed methods sequential design with the following component work streams: Systematic review and qualitative metasynthesis; Qualitative individual and group interview study; Self-administered postal/online survey of people with GBS and CIDP; Integration and synthesis of data from 1-3 to produce a report to inform recommendations for support..
Outcomes	Our study has helped the GAIN charity and other stakeholders to understand how to assess and improve the experience and 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. Publications 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. Siriwardena AN, Akanuwe JNA, Botan V, Laparidou D, Curtis F, Jackson J, Asghar ZB, Hodgson TL (2021). Patient reported symptoms and experience following Guillain-Barré Syndrome and related conditions: questionnaire development and validation. Health Expectations (online first).
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 as part of this study will facilitate repeated surveys of people with GBS and CIPD in future years.

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