Living with Giuillain-Barre' syndrome

Abstract

The potential long-term symptoms associated with Guillain-Barré syndrome (GBS) have been made evident in various studies. The purpose of the current investigation was to explore the meaning of living with GBS in a Maltese community setting following discharge from hospital. The study adopted a Heideggerian phenomenological approach. Four Maltese female participants were identified through purposive sampling, two to four years following their diagnosis. The women had all been treated in the Intensive Therapy Unit (ITU) of a Maltese general hospital at the acute stage of their illness. They were interviewed twice in their own environments. Data analysis led to the identification of three super-ordinate themes, namely Lost at Sea, Propelled into Change and The Aftermath. Participants spoke about the long-term symptoms related to GBS which left them feeling worn out most of the time. Subsequently, they were induced to delegate strenuous everyday roles to others, typically close family members. Participants highlighted a feeling of indebtedness towards their relatives, although at times they also felt ‘suffocated’ due to being over-protected. The women were very grateful for the professional care they received as hospital in-patients. However, when back in the community they felt that health care professionals failed to empathise with their needs. Participants described GBS as a “shot out of the blue” that totally transformed their lives. Although GBS changed their outlook on life, they never gave up hope of having a better future. However in trying to re-integrate themselves in society, they were faced with various environmental obstacles and 'human barriers' that led them to social isolation. A key recommendation of the study is the need for an effective discharge planning programme intended to help these patients make a smooth transition as they return back to the community.