Patients’ experiences and perceptions of Guillain-Barré syndrome: a systematic review and meta-synthesis of qualitative research

Problem: Guillain-Barre syndrome (GBS) is an immune-mediated polyradiculoneuropathy, with an incidence of 1-2/100,000 per year and variable severity. Due to the rarity of this condition there is limited evidence exploring the experiences of patients with GBS. The aim of this study was to review patients’ experiences and perceptions of GBS, by conducting a systematic review and thematic meta-synthesis of qualitative studies of patients’ experiences of GBS. Approach: We searched twelve electronic databases, supplemented with internet searches and forward and backward citation tracking from the included studies and review articles. Data were synthesised thematically following the Thomas and Harden approach. The CASP Qualitative Checklist was used to assess risk of bias in included studies. Findings: Our search strategy identified a total of 4,204 citations and after removing duplicates and excluding citations based on title and abstract, and full-text screening, five studies were included in the review and meta-synthesis; all included studies were considered of acceptable quality. Through an iterative approach, we developed six analytical themes. The first theme discusses the patients’ initial symptoms, how they struggled to receive a diagnosis, their feelings of uncertainty, and how hope of recovery was their main motivation forward. The second theme summarises the effects of GBS on all aspects of patients’ lives, including their ongoing physical difficulties (e.g. pain and fatigue), their psychological well-being (e.g. anxiety and fear), their family and social lives, as well as their ability to work. The third theme describes how participants were not satisfied with the support they received from healthcare services and that this was considered a key barrier preventing their recovery from GBS. In contrast, the fourth theme discussed how some participants had positive feelings towards the healthcare and the support they received from family, friends and peers. The final two themes discuss the participants’ path to recovery through achieving milestones and slowly accepting their situation. Their desire to go back to their pre-GBS selves, and the importance of re-valuating life are also presented.Despite the variety of experiences, it was evident that being diagnosed with and surviving GBS was a life-changing experience for all participants. Consequences: Exploring this literature has enabled us to identify how patients may need extra support to cope better with their recovery and also identify ways that healthcare professionals and services can help facilitate further such a recovery. Funding acknowledgement: The study was supported by a grant from the GAIN (Guillain-Barre & Associated Inflammatory Neuropathies) charity.