UNDERSTANDING THE PATIENT’S RECALLED EXPERIENCE OF AN ACUTE EPISODE OF GUILLAIN-BARRE’ SYNDROME: A QUALITATIVE DESCRIPTIVE STUDY

Abstract

Guillain-Barre’ syndrome (GBS) is a rare disease that affects the peripheral nervous system. It is autoimmune in nature and generally presents with areflexia and paresthesias that can lead to total paralysis. Guillain-Barre’ syndrome, with the eradication of polio, is now the leading cause of flaccid paralysis in the United States. This condition produces significant mortality and morbidity challenging the entire healthcare team, but particularly nurses. Guillain-Barre’ syndrome is not understood well by nurses. Patients who have experienced a moderate to severe case of Guillain-Barre’ syndrome have reported that nursing care was inconsistent. Patients have disclosed that nurses do not have the knowledge related to the special needs of GBS patients. Because of this lack of knowledge, patients experience unnecessary discomfort and/or stress. Research to better understand the impact of an acute episode of Guillain-Barre’ syndrome and the care required during hospitalization is crucial in order to educate caregivers and enhance the patient’s care experience. The purpose of this study was to gain a richer understanding of the patient’s recalled experience of an acute episode of moderate to severe Guillain-Barre’ syndrome. A qualitative descriptive design was utilized to answer three research questions. Orem’s self care deficit theory of nursing was utilized to inform this research study. Data were collected through semi-structured interviews with 14 participants. The sample included 10 females and four males from 19 to 79 years old from eight different states. Inductive content analysis was utilized to analyze the data to establish themes. Five major themes were identified: physical manifestations of GBS, attitudes and emotions, knowledge and awareness, the value of peer contact, and care concepts. These themes would suggest that healthcare team members, including nurses, do not have an understanding of the special needs of Guillain-Barre’ syndrome patients. Additional work and research is needed to enhance the patient’s experience with moderate to severe Guillain-Barre’ syndrome. Implications are evident in the areas of practice, educational preparation of healthcare staff, health policy and future research.