ArticleHealth expectations : an international journal of public participation in health care and health policy2020
Exploring the experiences of having Guillain-Barré Syndrome: A qualitative interview study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed.
- Health service access and delivery for people living with rare disorders: a scoping review.Orphanet journal of rare diseases · 2026Article
- Living Through Acute Helplessness and Ongoing Recovery: A Phenomenological Study of Patients with Guillain-Barré Syndrome Undergoing Therapeutic Plasma Exchange.Patient preference and adherence · 2026Article
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- Patient Experiences of the Biopsychosocial Impact of Guillain-Barré Syndrome: A Scoping Review.Patient preference and adherence · 2025Review
- A scoping review of health literacy in rare disorders: key issues and research directions.Orphanet journal of rare diseases · 2024Article
- Patient-reported symptoms and experience following Guillain-Barré syndrome and related conditions: Questionnaire development and validation.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Relationships and Communication-the core components of person-centred care.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Exploring the experiences of having Guillain-Barré Syndrome: A qualitative interview study.Health expectations : an international journal of public participation in health care and health policy · 2020Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundGuillain-Barré syndrome (GBS) is a rare inflammatory disorder affecting the peripheral nerves. Although typically there is full neurological recovery, some people continue to experience residual physical, psychological or social problems longer term. Evidence describing the experiences of people with GBS is limited.
objectiveWe aimed to explore the experiences of people with GBS in the UK.
designWe used qualitative (face-to-face and telephone) interviews to explore experiences of people with GBS. Audio-recorded data were transcribed verbatim and analysed using the Framework Method supported by NVivo 11. SETTING AND
participantsWe purposively recruited a sample of 16 volunteers with a prior diagnosis of GBS of varying age, sex, ethnicity, location, marital status, time since diagnosis and length of hospital stay to maximize differences in experience. Interviewees were required to have been discharged from hospital, able to give informed consent, able to speak and understand English and currently resident in the United Kingdom.
resultsThe key themes arising from the analysis were as follows: the importance of early diagnosis; the experiences of inpatient care; the importance of active support for recovery; the need for communication throughout the course of the illness; the need for greater awareness, knowledge and provision of information by health-care staff; and path to achieving function.
conclusionThis is the first qualitative study exploring experiences of people with GBS in the UK through their whole illness journey from onset to recovery. The findings contribute to our understanding of the experiences and support needs of people recovering from GBS.
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