The latest research from CaHRU, ‘Exploring the experiences of having Guillain-Barré Syndrome: a qualitative interview study’, was published in the international journal, Health Expectations, in July 2020. The study, funded by the GAIN charity and led by Prof Niro Siriwardena, involved a collaboration between Dr Joseph Akanuwe, Despina Laparidou of CaHRU, Dr Ffion Curtis from Lincoln International Institute for Rural Health, Dr Jennifer Jackson (Lincoln International Business School) and Professor Tim Hodgson (School of Psychology).
Guillain-Barré syndrome (GBS) is a rare condition which rapidly affects the nerves often leading to complete paralysis. Most people fully recover over a period of two years or longer, but some will experience longer physical, psychological or social problems. The study team sought, for the first time, to explore the experiences of people with GBS in the UK through their whole illness journey from onset to recovery using qualitative interviews in 16 volunteers with a previous diagnosis of GBS of varying experiences due to age, sex, geographical location, marital status, time since diagnosis and length of hospital stay.
The study found that participants valued early diagnosis. They reported varying the experiences of inpatient care some positive while others were negative. There was an emphasis on the importance of active support for recovery, the need for communication throughout the course of the illness and a need for greater awareness, knowledge and provision of information by healthcare staff. Finally, those affected described their, often difficult, journey to achieving function which often led to a need to accept limitations. The study will contribute to understanding the experiences and support needs of people recovering from GBS.
By Prof Niro Siriwardena