Exploring the experiences people living with Guillain-Barré Syndrome and its variants: a qualitative interview study
Guillain-Barré syndrome (GBS) is a rare, usually acute, autoimmune disorder, affecting peripheral nerves within 2-4 weeks of onset and leading to paralysis and sometimes respiratory failure requiring ventilation. Variants of the condition can affect cranial nerves and a more chronic form, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), also exists. Some people continue to experience difficulties, even months or years after the acute condition. Since there is limited evidence describing the experiences of those living with the condition, we sought to explore the experiences of people with GBS and its variants, including their ongoing physical, psychological and social care needs, in the UK.
Following ethical approval, we recruited a purposive sample of 16 people with a previous diagnosis of GBS or its variants, who consented to interview. Recruitment was through an advert placed in the Guillain-Barré and Associated Inflammatory Neuropathies (GAIN) charity website and through social media. We collected data using individual semi-structured interviews, either face-to-face or by telephone, based on participants’ preferences. Audio recorded data were transcribed verbatim and analysed using thematic analysis method supported by NVivo 11.
We identified six overarching themes which affected the recovery journey for people with GBS: (1) the importance of early diagnosis to enable early commencement of treatment; (2) the importance of experience of inpatient care; and (3) the importance of active support for recovery in relation to healthcare, disease, psychological, prior health, self-care and lifestyle, social and occupational factors. Furthermore, (4) the importance of good communication throughout the course of the illness and its recovery; (5) the need for greater awareness, knowledge and provision of information by health care staff; and (6) the need to adjust to and redefine recovery, were also highlighted by participants as important for their recovery to health and function.
We identified important factors that could facilitate improvements in the quality of care, experiences of illnesses and recovery of people with GBS or its variants. Early effective access to healthcare and treatment were considered important, but a positive experience of care together with physical, psychological and social support were also perceived to be essential for a good recovery. There is a need for greater knowledge and information provision from healthcare workers, including primary care, which has implications for staff training, and for the development of information resources for patients and their families. Patients identified their need to adapt to ongoing difficulties in function and they sought to redefine what recovery meant for them in relation to this.