Exploring the experiences of having Guillain‐Barré Syndrome: A qualitative interview study

Abstract Background Guillain‐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. Objective We aimed to explore the experiences of people with GBS in the UK. Design We 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 Participants We 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. Results The 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. Conclusion This 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.


| BACKG ROU N D
Guillain-Barré syndrome (GBS) is a rare neurological disorder in which the body's immune system mistakenly attacks part of its peripheral nervous system following an acute infection or other immunological challenge. 1 GBS is a monophasic post-infectious condition, affecting peripheral nerves with variable presentation and severity, following which most people with the condition experience full neurological recovery and resolution. The incidence of GBS is approximately one in 100 000 per year and, while more common in adults and the elderly, it can also affect children and adolescents. 1 There are variants of the condition, for example affecting the eye muscles (Miller-Fisher syndrome), leading to motor but not sensory loss (acute motor axonal neuropathy [AMAN]), or causing distal weakness and sensory symptoms (acute motor and sensory axonal neuropathy [AMSAN]). 2 The pathophysiology of GBS begins with acute inflammatory damage to the myelin sheath covering motor and sensory nerves or the nerve axons themselves, which causes subacute onset weakness and abnormal sensation. 2 The inflammation damaging the nerves is short-lived, and then, the nerves recover slowly as the damaged myelin or axon regenerates. The initial symptoms take different times to recover, or sometimes do not completely recover depending on the extent of the initial damage. 2 Following recovery from the acute phase of the illness, incompletely recovered or scarred nerves can cause long-term symptoms, and some people continue to experience these residual problems, either physical, psychological or social, months or even years later. 1 Studies, mostly based on quantitative methods, have reported residual physical problems in 20%-30% of patients, [3][4][5] and long-term changes in leisure and social activities in 27%-37% of patients. 6,7 These residual problems have reportedly led to reduced quality of life for patients several years after the onset of the condition. 8,9 Few qualitative studies have previously been conducted exploring experiences of people with GBS. Two studies focused on experiences at the onset and during acute hospital care. 10,11 Further studies explored experiences of the recovery process from dependency to regaining independence, 12 experiences of returning to work as a significant step in the recovery process 13 and experiences of disability in everyday life and managing the recovery process after falling ill with GBS. 14 With the exception of one study, 13 previous studies were conducted outside the United Kingdom (UK). In this study, we aimed to use qualitative methods to explore the experiences of people with GBS in the UK.

| Design, sampling, identification and recruitment
We used a qualitative interview design with individuals previously diagnosed with GBS. The Illness Trajectory Framework (ITF) 15 was used to inform data collection, analysis and reporting.
Illness Trajectory Framework argues that illnesses have a trajectory which involves the following sequential phases: (a) initial or pre-trajectory phase (before any signs or symptoms); (b) trajectory onset phase (onset of signs and symptoms leading to diagnosis); (c) crisis phase (experience of a potentially life-threatening situation); (d) acute phase (when symptoms can be controlled by a prescribed treatment); (e) stable phase (when symptoms are controlled); (f) unstable phase (when symptoms are not controlled despite the treatment regimen applied in the previous stage); (g) downward phase (progressive deterioration in mental and physical status); and (h) dying phase (the period preceding death). 15 We selected the ITF for this study because, although most patients with GBS recover fully neurologically, recovery can be prolonged for months or years, and even those that do recover will go through an illness trajectory from symptom onset to longer term physical, psychological and social sequelae that can negatively affect their quality of life. 6,16 We used purposive sampling to recruit volunteers using the following inclusion criteria: people with a prior diagnosis of GBS, who had been discharged from hospital; able to give informed consent; able to speak and understand English; and resident in the United Kingdom. We also selected participants on the basis of age (adults aged 18 years or over), sex, marital status, location, time since diagnosis, and length of hospital stay, to ensure variation in these characteristics and a range of experiences.
We recruited eligible individuals via social media and through the Guillain-Barré and Associated Inflammatory Neuropathies (GAIN) charity website and their social media pages. There were instructions in the advertisement for interested potential participants to contact the research team via telephone or email. On contacting the researcher(s) to express interest in taking part in a face-to-face or telephone interview (according to the participant's preference), study information sheets and consent forms were emailed to potential participants. Verbal or written consent was received from all participants prior to the interviews. There were no dropouts or refusals to participate once the sample was recruited.

| Data collection
We gained ethical approval from the University of Lincoln ethics committee. We collected data using individual face-to-face or telephone semi-structured interviews, based on the participants' preference and following informed consent. The interview schedule was piloted with the first two participants with no changes required to the schedule. Each interview lasted from 45 minutes to one hour and was audio recorded with participants' consent.

| Data analysis
The audio-recorded data were transcribed verbatim, entered into NVivo 11 and analysed using the Framework Method of thematic analysis. 17 We used the Illness Trajectory Framework (ITF) as a lens through which to understand the participant's journey from illness onset to their current state of health.
The interviewer, a clinical nurse with expertise in qualitative methods by background, was not an expert in GBS and had no prior relationship with the participants; he sought to maintain an open mind and ensure his personal views and knowledge did not influence the views of participants. The wider academic team consisted of an academic general practitioner, two qualitative researchers, a behavioural psychologist and cognitive neuroscientist who took part in the analysis.
The analysis firstly involved all team members familiarizing themselves with the data by reading and re-reading transcripts. Guided by the phases of the ITF, the data were then coded by the interviewer and a qualitative researcher. Codes were discussed with the research team and developed iteratively, through further interpretation and discussion with the research team who met several times to identify descriptive and then higher order or overarching themes.
The Consolidated Criteria for Reporting Qualitative Studies 18 (see Table S1) was followed, to ensure transparency and trustworthiness in reporting our research. Further, we maintained an audit trail of the data analysis process (details of parent codes, descriptive and higher order themes in Table S2), adding to the trustworthiness of the results. [19][20][21] Data saturation was reached after the analysis of data from 16 participants, meaning no new codes or themes were being generated. 22 Therefore, we decided not to recruit more participants.

| Participants
All participants were resident in the UK at the time of the interview.
Most participants (10/16) opted for a telephone interview with a few (6/16) opting for a face-to-face interview at their own homes.
Participants' ages ranged from 30 to 79 years. There were slightly more male participants than female, most participants were white, with the majority being married or cohabitating. Most people had been diagnosed with GBS for 2 years or fewer, followed by those diagnosed for 10 years or more, and on the whole, most people spent 16 weeks or more in hospital before discharge. Details of participant characteristics are in Table 1.

| Themes
Through the process of analysis, we identified six overarching themes, which covered the illness journey from experiencing the first symptoms to recovery, and aligned with the trajectory onset, crisis, acute and stable phases of the ITF (Table 2). Two further themes (communication; awareness, knowledge and information provision) encompassed the whole illness journey.
Themes are presented in the following order: importance of early diagnosis (trajectory onset phase); experience of inpatient care (crisis phase); active support for recovery (crisis and acute phases); communication; awareness, knowledge and information provision; and redefining recovery (stable phase). These are described in detail below and in Table S3.

| Importance of early diagnosis
Early diagnosis was felt to be important, enabling treatment to be started in a timely way and preventing potential complications: Yes. There is no doubt, if the GP hadn't got it spot on first time, then I would have ended up in intensive TA B L E 1 Characteristics of participants

| Active support for recovery
Participants described health care-related; disease-related; psychological; prior health, self-care and lifestyle; and social and occupational factors that helped or hindered recovery.

Health care-related factors
Health care-related factors that supported or hindered recovery included the following: early investigations; specific therapies;  The illness sometimes had a negative impact on families and this, in turn, affected recovery. One family was terrified of losing their affected member (the participant) after being told of the possible outcomes of GBS: 'They also told the family that most people recover, but sometimes people don't. So, they were all terrified that I was going to die' (Participant 9). In terms of how my life was pre-GBS, it has just been turned upside-down. Before I had GBS, we were moving into a new build house. We hadn't been on holidays. All that is gone.

(Participant 12)
Stigma was another factor that hindered recovery, preventing some people from seeking help: I think the one big problem I did have, I suppose, was my own pride. I didn't like to be seen as disabled. I didn't like that label put on me, but unfortunately that is how I was labelled, and to a certain extent, possibly seen to be even now.

(Participant 4)
Similarly, a participant avoided crowds, because he did not want to be seen in a wheelchair: Yeah, I don't tend to go out much. I don't like crowds.
I get embarrassed a bit when I see people I haven't seen for years. They see me in a wheelchair. It is a kind of a stigma thing.
(Participant 12) While benefits may not have been enough for some, they were a support for some participants who had returned to work and were struggling with transport as they were unable to drive: 'There was no way I could drive anyway, but I managed to get a grant for a taxi to work every day and back again' (Participant 5).

| Occupational factors
Occupational factors that were perceived as hampering recovery included being forced to stop working due to the illness and the financial burden of not working. Following the onset of GBS, some people could not work even on a part-time basis and were forced to retire: 'I never got back to work. I wasn't able to go to work' (Participant 4). Others had to give up self-employment: 'I haven't been to work ever since it happened. I was working for myself' (Participant 3). As a result of not being able to work as before, some people experienced some degree of financial burden: 'Honestly, going from a £50K a year job down to benefits…' (Participant 1).

| Awareness, knowledge and information provision
Participants identified elements of awareness, knowledge and information provision as lacking throughout the illness journey.

| D ISCUSS I ON
This study explored the experiences of people with GBS and iden- Previous long-term studies have found that residual problems adversely affected quality of life in adults recovering from GBS. 6,7,9,10 For example, Bersano et al from interviews with 70 patients 3-5 years from onset of GBS found that most participants (64%) made a complete functional recovery, while others (27%) were independent with only minor limitations in daily activities, and a few (9%) needed help during the day; importantly, over a quarter ( 27%) had substantial changes in their job, hobbies or social activities. 7 Neuropathic pain was also found to affect over a third of people with previous GBS29 and fatigue is another common symptom. 2 Psychological disorders associated with GBS such as anxiety, depression, post-traumatic stress disorder, insomnia and other sleep disturbances 29,30 can hinder recovery. A positive attitude to recovery was seen as helpful and was consistent with GBS being perceived, at least at the initial stages of the illness, to be a temporary condition with a predictable outcome of recovery. 31,32 As response shift theory suggests, 23 a positive attitude in this situation is a helpful coping strategy that encourages an individual's resolve or determination to get well. Receiving counselling and being discharged from an inpatient care setting to a home environment were also perceived by participants as supporting the recovery experience, as these helped to improve patients' expectations of recovery, with social support from family and friends also increasing coping, well-being and quality of life. In contrast, anxiety, depression or sleep difficulties, at the initial or later stages of the illness were perceived as hindering recovery.
Previous studies have shown that older age, severe disability at admission and nadir, ventilator dependence and type of nerve dysfunction affect long-term prognosis. 27 Participants in this study also perceived that being younger helped recovery but they also felt that The opportunity to return to a supportive working environment helped patients to cope and reorder their goals, 23 whereas early retirement due to the illness was perceived to further hinder recovery. In a previous study, 62% of patients were able to return to their former employment post-GBS, with the rest needing alterations at work to cope with the physical demands of their roles. 33 In other studies, fewer than half of GBS patients returned to work within two years, 9 with some only managing reduced hours or part-time work 6,33 due to loss of muscle power, muscle pain, disturbed sensation and fatigue. 7,33,34 Unemployment or retirement resulted in financial burdens not alleviated by benefits. 13 Effective communication is a known factor in patient satisfaction, complaints and integral to high-quality health care. 35  Colleagues at work made an important contribution to people with the condition feeling 'normal' again. 13

| Strengths and limitations
This is the first qualitative study exploring the experiences of peo- The illness trajectory of 16 people with GBS may not be a true representation of people with GBS in the UK as we did not assess or recruit on the basis of disease severity, but we did reach data saturation after interviewing and analysing data for 16 participants. We used the ITF to help explain the illness journey of GBS patients in our study, from symptom onset through to recovery. Although we acknowledge that the ITF was designed for a chronic illness trajectory, rather than an acute condition with neurological recovery in most GBS patients, we heard from participants in this study that they experienced longterm physical, psychological and social symptoms. Some participants included in the study had severe residual disabilities requiring aids such as a wheelchair and this may have represented a subgroup of patients who also had more difficult psychological and social experiences of recovery. Nevertheless, we wanted to explore the range of experiences of patients with GBS rather than the experiences of a representative sample and our approach reflected this approach.
It was not within the scope of this study to assess associations between the findings and participant characteristics, such as age, sex and ethnicity, and we did not explore the functioning and severity of disability of participants. We also did not explore the views of health-care professionals and family members or carers of people with GBS in this study. These will need to be considered in further research. We were unable to confirm the diagnosis of GBS via medical records and relied on the use of screening questions on recruitment to interviews to recruit participants with a self-declared diagnosis of GBS. Certain participant characteristics such as time since diagnosis and length of hospital stay may have been subject to recall bias.

| Implications for practice, policy and future research
Early detection and treatment of GBS to facilitate recovery and prevent complications is important to patients but structured followup care and rehabilitation, appropriate to the medical and social care needs of individual patients following discharge from hospital, should also be planned and implemented more widely for those with GBS. 36 Rehabilitation has been shown to be effective, 37 but outpatient provision may not always be available to those who could benefit. 38 More needs to be done to raise awareness among health-care staff about rare but serious conditions such as GBS and provide appropriate training where this is needed. Greater knowledge among health-care staff would benefit GBS patients, their families and informal carers and signposting to further information and support would also be valuable. Charities such as GAIN are currently offering a range of support and advice services, which are valued by patients with GBS, 36 but more could also be done through centres of expertise to provide information and support to both patients, families and staff.
Although GBS is a monophasic disease and patients often achieve a neurological recovery, residual symptoms such as neuropathic pain and fatigue, with causes secondary to or complicating the primary neurological pathology, may occur. Fatigue may respond to exercise 39 and neuropathic pain to drugs 36 but further research to explore treatments and strategies to alleviate these residual symptoms is important for improving experience and quality of life (QOL) of patients with GBS.
Future research should also explore the perspectives of healthcare professionals, and family members or carers of people with GBS. While the current interview study provides an in-depth insight into the experiences of the study population, further larger scale quantitative studies are recommended to provide further evidence about current and future health-care provision and support for individuals with GBS and related conditions. As the emphasis on self-care and peer or other support services increases, it would be helpful to understand how these could be optimized.

| CON CLUS ION
The key themes identified within this paper have provided a framework to enable us to begin to understand the perceived factors that helped or hindered the participant's journey from symptom onset through to recovery. In exploring the experiences of individuals with GBS, we can develop a better understanding of the care and support that they require.

ACK N OWLED G EM ENTS
We thank the study participants; the GAIN charity, members of the Community and Health Research Unit (CaHRU) and the Healthier Ageing Patient and Public Involvement (HAPPI) group who reviewed and advised on the conduct of study.

CO N FLI C T O F I NTE R E S T
The authors have no competing interests to declare.

AUTH O R S ' CO NTR I B UTI O N S
ANS had the original idea for the study. The study was designed by ANS and JNA, supported by DL, FC, JJ and TLH. Fieldwork and analysis were conducted by JNA supported by ANS, DL, FC and JJ.
JNA wrote the first draft of the paper, and all the authors edited and approved the paper.

E TH I C S A PPROVA L A N D CO N S E NT TO PA RTI CI PATE
The study was approved by the Lincoln University Ethics Committee.
All interviewees gave informed consent to participate. The study was performed in accordance with the Declaration of Helsinki.