Previous research has revealed that nursing care has been inconsistent and that nurses do not have an understanding of the special needs of the GBS patient. These issues lead to unnecessary stress and discomfort for patients and families. It is important that nurses have the knowledge and resources necessary to provide the highest level of care possible to GBS patients.
A nursing researcher, Dr. Hooks, wanted to better understand the patient’s experience with moderate to severe hospitalized Guillain-Barré syndrome patients in order to frame potential recommendations for improvement in nursing care guidelines, health policy, and education. Dr. Hooks’ qualitative study allowed him to interview fourteen individuals about their experience with moderate to severe Guillain-Barré syndrome. These participants were from eight (8) states representing primarily states located within the southeastern part of the United States. Seventy one point four (71.4%) percent of the participants were female and 28.6% were male. Ages of participants ranged
from 19 to 79. All of the participants were hospitalized anywhere from 5 days to 405 days.
The findings of the study revealed five (5) major themes. First, participants described the manifestations of physical symptoms at the beginning of their illness, what they
thought of these symptoms, and the subsequent progression of symptoms. Participants described the initial symptoms as “strange” or “odd” sensations or peculiar feelings. When participants initially started to experience symptoms, they tried to explain away the symptoms. Participants attempted to relate these symptoms to normal everyday activities and/or occurrences (such as a common illness, stress, or overworking). Most participants described the pace and progression of symptoms ranging from very quick onset to others who had a more prolonged onset. Pain and fatigue was also a major complication for participants.
The second theme centered around the attitudes and emotions that participants experienced during their course of illness. This theme illustrated the wide range of emotions that participants encountered; how having a positive attitude impacted mental well-being and was a useful coping strategy, how independence was desired, and how participants experiencing significant levels of personal disability still had concern for their loved ones well-being.
The third theme concerned the knowledge level of participants at the beginning of their illness and the desire that they had for additional information from caregivers
and other resources. Participants had no knowledge of the illness and utilized multiple methods to learn more about it after being diagnosed. Participants wanted members of the healthcare team to have more knowledge about the illness when directing and providing care to individuals with GBS.
The fourth theme revealed the importance of peer contact. Participants commented on the value of being able to talk with an individual who had also been ill with Guillain-Barré syndrome. This provided the participants with hope about recovery and the future. Participants described that information coming from an individual who had been
through the illness is preferred over information coming from healthcare team members who had not actually been ill with Guillain-Barré syndrome.
The last theme that emerged from the data was related to the general care that was provided. This theme revealed the impact that the lack of staff knowledge had on participants. In addition, this theme presented information related to the concept of personalized patient centered care and communication with caregivers. This theme also illustrated the positive impact that accomplishing achievements has on participants. Dr. Dwayne Hooks will be attending the Symposium in San Antonio this September and will be able to share more about his findings.
These themes suggest that, generally speaking, healthcare team members, including nurses, do not have an understanding of the special needs of Guillain-Barré syndrome patients and that care is not consistent. Additional work and research is needed to enhance the patient’s experience with moderate to severe Guillain-Barré syndrome. Implications are evident in the areas of practice, educational preparation of healthcare staff, health policy and future research.
If you have questions about this research, or if you would like to participate in future studies about the care provided to GBS patients, please contact Dr. Dwayne Hooks at firstname.lastname@example.org. Future research will continue to focus on individuals who have recovered from GBS, as well as families and support systems, and professional and lay caregivers. A list of references for this article will be made available on request.