A mixed method investigation into the psychological well-being of individuals who have suffered from Guillain-Barré Syndrome

The needs of patients who are nursed on the ICU are becoming more widely recognised and services are beginning to reflect this. However there is little research into how patients who have suffered from a severe and progressive muscular paralysis called Guillain-Barré Syndrome (GBS) experience the disease and subsequent hospitalisation. The purpose of this study was to explore how these patients experience the different aspects of the illness, including an extended period of paralysis and treatment on an ICU. This is intended to expand upon the limited research in this area and identify how the findings can inform clinical practice and future studies. Method: A systematic literature search identified research in relation to the experiences of individuals who had GBS which was utilised to form the basis of the understanding for this study. Very little systematic research has looked at individuals‟ experiences of Guillain-Barré Syndrome whilst ill and their subsequent recovery. A mixed methods study was carried out with the aim of adding to this research. Interpretative Phenomenological Analysis was selected as the method of analysis for Study 1, which involved interviews with seven participants who had experienced GBS severe enough to need treatment on an ICU. This then enabled quantitative questionnaires to be disseminated which asked about individuals‟ levels of anxiety, depression and Post Traumatic Stress symptomatology both retrospectively and following recovery in Study 2. Results: Study1 found that participants experienced GBS as either a slow and frustrating, or as a rapid and scary onset. The main themes that were developed included: the paralysis being viewed as multiple losses, frustration, difficulties associated with communication loss, vulnerability and frightening hallucinations. Study 2 utilised non-parametric analyses of the data and found that participants experienced high levels of anxiety and depression at the onset of GBS and that some continued to experience anxiety, depression and post traumatic symptoms after recovery from GBS. Generally the profile suggests predominantly anxiety problems during the acute onset phase and then predominantly depression at the time of follow-up. Aspects of post traumatic stress were positively correlated with duration of mechanical ventilation which in turn was related to duration of paralysis. This challenged the hypothesis that GBS patients habituate to the experience of paralysis. Conclusion: For some individuals, GBS was experienced as a frightening event, but one that they could draw positive things from. However, for others, GBS was experienced as a traumatic event and some of these people continued to exhibit signs of psychological distress even after recovery. It remains important for staff to feel able to speak about distressing situations with their patients and to signpost them to other psychological services if appropriate.