The Psychological Effects of Guillain-Barré Syndrome: A Grounded Theory Study

Abstract

Guillain–Barré syndrome is a rare neurological condition. Research has increased our understanding of the etiology, prognosis, and effective medical treatment of the illness. There is a lack of understanding regarding the psychological effects and what could help patients. This study aimed to begin to address this using constructivist grounded theory. Eleven interviews were conducted with participants who had received a diagnosis of Guillain–Barré syndrome in the preceding 4 years. The model that emerged identified two key processes: “Loss, determination, and adjustment” and “The unknown.” “Receiving support,” “Obtaining knowledge,” and “Experiencing hope” assist in navigating these psychological effects. The findings emphasize the all-encompassing effects of Guillain–Barré syndrome, illustrating the need for rehabilitation professionals to alleviate uncertainty and foster practices that could facilitate patients’ navigation through the illness. Recommendations for further research are provided.

Introduction

Guillain–Barré syndrome (GBS) is a rare immune-related neurological disorder, usually triggered by an acute infectious process. It is the most common form of acute paralytic neuropathy with 0.5–2 cases per 100,000 individuals each year (Esposito & Longo, 2017). The incidence rate of GBS increases with age and is slightly more frequent in males than females (Hughes et al., 2016). GBS patients require meticulous monitoring and supportive care (Hughes et al., 2005). Both general medical care and immunological treatment are essential (Willison et al., 2016). Effective medical treatments include intravenous immunoglobulin (IVIg) and plasma exchange. Despite this, many individuals will continue to develop severe weakness and have a long disease course, often with incomplete recovery, pain, and fatigue (Willison et al., 2016).

GBS is typified by rapid onset of symptoms characterized by weakness in lower limbs first, followed by rapid progression in an ascending fashion. Patients often notice weakness in their legs initially, and over a period of hours to days the arms and facial muscles become involved, with lower cranial nerves also affected for some (Pithadia et al., 2010; Willison et al., 2016). A quarter of patients require artificial ventilation, and many require admission in a high or intensive care setting (Willison et al., 2016). A diagnosis needs to be made quickly to ensure appropriate treatment is provided, and is largely based on clinical patterns due to the lack of biomarkers (Willison et al., 2016).

For most, the greatest improvement occurs in the first year, although some may show further recovery after three or more years (Forsberg et al., 2012; Willison et al., 2016). Residual effects can substantially affect quality of life (Merkies & Kieseier, 2016) and range from pain and fatigue to limb immobility. Many must adapt their daily activities and work, even when they achieve a good functional recovery from GBS (Bernsen et al., 1999). Following the Zika outbreak in 2015–2016, there was an increased awareness of GBS and research aiming to understand the etiology, prognosis, and effective medical treatment of the illness (Krauer et al., 2017; Song et al., 2017). GBS associated with COVID-19 has been reported and is viewed as an important post-infectious consequence (Khan et al., 2021).

GBS, like other acute illnesses with a lengthy recovery period, is likely to be accompanied by psychological symptoms (Rattray, 2013). Hillyar and Nibber (2020) conducted a review of the evidence for psychiatric symptoms associated with GBS, reviewing both case reports and case studies. The main findings in the literature were stress, anxiety, depression, fatigue, sleep difficulties, visual hallucinations, paranoid delusions, disorientation, terror, and psychosis. These symptoms occur in the acute phase of GBS and may lead to longer term psychiatric difficulties. The authors argued for a multi-disciplinary approach to GBS management, to assist with both physical and psychological recovery.

Qualitative studies have provided insight into the unique experience of GBS. Eisendrath et al. (1983) conducted a prospective study with eight patients with GBS in an intensive care unit (ICU). During onset, a sense of vulnerability was described as individuals experienced a transition from being well to needing mechanical ventilation. Feelings of anxiety, depression, and anger emerged during the plateau phase, due to the uncertainty of the illness. The authors demonstrated the vulnerability, anxiety, and depression that individuals experienced whilst in an ICU and provided insight into the psychosocial needs that patients and their families experienced.

Forsberg et al. (2008) used content analysis with 35 Swedish participants to explore the experience of falling ill with GBS. Feelings of fear, worry, and hope during onset were identified. The onset was described either as an incomprehensible, prolonged, increasing deterioration, or as a frightening, rapid onset. The diagnosis stage generated themes around confidence in recovery, worry, and feeling too ill to care. The illness stage encompassed fear and insecurity, hopeful improvement, alarmingly slow recovery, and strange bodily and mental sensations. The authors conducted a follow-up study to explore the experience of GBS two years after onset, with the same participants. There was an overall theme of striving for a balance in everyday life, with sub-themes around the experience of disability and the recovery process (Forsberg et al., 2015).

Cooke and Orb (2003) examined the perspectives of five individuals with GBS during the recovery phase, using a constant comparative approach. Five steps of recovery were identified: experiencing physical dependence, encountering helplessness, wanting to know more about GBS, discovering inner strength, and regaining independence. Visits from those who had recovered from GBS and emotional support from family were helpful. However, there was no indication regarding how interview schedules were updated between interviews, and there was little description of how the concepts in this grounded theory linked together to create a theoretical model.

Akanuwe et al. (2020) explored the experiences of having GBS using a qualitative approach with 16 participants in the United Kingdom, using The Illness Trajectory Framework (Corbin & Strauss, 1991) to inform the study. Key themes were 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 healthcare staff; and path to achieving function.

Whilst the literature has explored psychological sequelae of GBS, there has tended to be a focus on specific psychological symptomology and diagnoses rather than a more general focus on the psychological effects of the illness, from individuals’ own perspectives, as well as the factors that may influence these effects. Greater insight would help ascertain the support required for patients, both in hospital and once discharged.

The present study therefore aimed to develop understandings of the psychological effects of GBS, through creating a substantive model that is grounded in individuals’ experiences. The term “psychological effects” was used as a deliberately broad term, to encompass all psychological experiences and to elicit responses around psychological distress, coping, and the support required across the duration of the illness. The researchers were interested in how individuals responded to GBS in terms of their thoughts, feelings, and behaviors. Further aims were to interpret if the psychological effects changed over the course of the illness and the recovery period, and to identify what processes impacted or moderated these psychological effects.

Method

Design

To develop an understanding of the psychological effects of GBS, constructivist grounded theory (GT) was used (Charmaz, 2019). GT involves a range of systematic strategies for conducting qualitative research and is useful as an exploratory approach when there is limited knowledge available. It is underpinned by a social construction of reality, whereby researchers are not detached observers but actively play a part in what they are studying and how they make sense of it (Barker et al., 2016). GT allows researchers to form an understanding of how meaning is developed by individuals (Kennedy et al., 2006). GT is particularly applicable for noting changes that occur in illness transitions: from health to illness to dying, from illness to health, or in the process of maintaining health (Morse, 2012).

Researchers’ Perspectives

It is important for researchers to articulate their beliefs and feelings about the world and to reflect on these to inform their choice of GT methods (Birks & Mills, 2011). All authors identify with a social constructionist perspective: in that their understanding of the world develops through language and their interactions with others. Thus, their epistemological position closely matches the method of constructivist GT.

Considering their perspectives enabled the researchers to increase reflexivity and enhance the credibility of the study findings. Reflexivity is an awareness of the ways in which the researcher, as an individual with a particular social identity and background, has an impact on the research process (Robson, 2002). For example, the first author had experience of working within an acute hospital setting, providing psychological therapy to individuals with a chronic condition. The second author is a Consultant Clinical Psychologist and Programme Director of a Clinical Psychology training course, who has worked with people with disabilities, particularly with children and adults with learning disabilities. The third is a Consultant Clinical Neuropsychologist with experience of working with people with neurological conditions. The fourth author is a Consultant Clinical Psychologist in neuropsychology who has also worked with people with neurological conditions. Both third and fourth authors have worked with people with GBS.

The main researcher, the first author, was a novice GT researcher and conducted the interviews and led the analysis. The second author has significant experience supervising doctorate level qualitative research and contributed to the analysis and supervised the research from an academic perspective. The third author, whilst experienced in other qualitative methods, was a novice to GT. She also contributed to the end model through discussion, supervised the research, and facilitated with participant recruitment as the gatekeeper within the NHS. The fourth author has a depth of experience of supervision and teaching of clinical psychology doctorate qualitative research projects, including GT studies, and assisted with model development.

It was likely that these experiences would influence the collection, content, and analysis of the data to some extent. A central principle of GT is that researchers should not impose their own beliefs and perceptions onto the data, but rather remain as open as possible to the emergent nature of the data, and an awareness of the researcher’s knowledge is needed to facilitate this (Mills et al., 2006). Reflexivity and the explication of the research process within memo writing helped the first author to ensure that she was being led by the data, not imposing her own perceptions onto it.

Recruitment and Participants

The study was conducted in a United Kingdom National Health Service (NHS) setting. University and NHS ethics committees provided ethical approval. Eligible participants were required to have (1) been diagnosed with GBS in the preceding 5 years; (2) been discharged from an inpatient setting and living in the community; (3) sufficient language and communication abilities to take part in the interviews; and (4) capacity to consent. Initially, convenience sampling was used. Potential participants were identified by the third author, who acted as gatekeeper, from local NHS databases, and a diagnosis of GBS was confirmed via medical records and discharge summaries. Those who met the inclusion criteria were contacted and invited to contact the researcher if they were interested in participating.

Potential participants were informed about the nature and purpose of the study both orally and via an information sheet, which detailed what was required of participants, in addition to confidentiality and data storage strategies. Participants who expressed an interest in proceeding were asked to sign a consent form on the day of their interview if they still wished to take part. Participants were advised that they could withdraw their data up to 1 week following their interview, as after this it would not be possible as their data would have been analyzed. No participants asked to withdraw. Participants were routinely given the opportunity to ask questions throughout the study.

Participants provided their demographic details, time since diagnosis, and the severity of their residual effects. This information was obtained so that theoretical sampling could take place effectively and the most appropriate participants could be selected to further saturate the categories as these developed. The data obtained from initial convenience sampling was analyzed to inform the qualities needed of the next participant and purposive sampling was employed (Morse, 2007). The researcher conducted all interviews and had no prior relationship with any of the participants.

Fifteen individuals with a diagnosis of GBS contacted the researcher expressing an interest. Of these, 11 participants took part. Theoretical sufficiency determined the end of data collection: when categories cope adequately with new data without requiring extensions and modifications (Dey, 1999). This was reached after 11 interviews, 3 months from the first interview. On onset of GBS, all participants had initially presented to Accident and Emergency Departments, and five had subsequently been cared for in an ICU, indicating the severity of their initial illness. All received inpatient multi-disciplinary neurorehabilitation. At the time of the interviews, three participants continued to use a wheelchair and four used a walking stick to assist with their mobility (see Table 1).

Table 1.

Participant Characteristics (N = 11).

	Mean (SD) or N	Range
Gender (female)	7
Age (years)	66 (8.3)	46–77
Ethnicity
White British	10
Indian British	1
Living alone	4
Years since diagnosis	3 (0.92)	1.5–4
Interview site
Home	9
Clinic	2

Procedure

Interviews took between 37 and 80 minutes. Each was audio-recorded and transcribed verbatim by the researcher on the same day that it took place. Semi-structured interviews were deemed the most suitable method for the generation of rich data. Open questions were used to generate detailed responses toward focused data, beginning with an initial interview schedule (see Appendix).

Subsequent interview schedules contained questions directly informed by the preceding analysis, as part of the iterative process of GT. Thus, the interview schedules were used only as a guide and not all questions were asked in each interview. Interviews took place in either the participant’s own home or at the NHS research site. A choice of interview location acknowledged the potential mobility difficulties that individuals with GBS may experience.

The data obtained through initial sampling was analyzed and theoretical ideas emerged, which then determined what further data should be collected to explore and elaborate on these ideas (Dey, 1999). The researcher thus employed theoretical sampling: interviewing participants who would provide rich information to address the question and confirm the emerging model. For example, after six interviews, there was an emerging difference between individuals with less and more severe residual effects of GBS. Thus, subsequent interviews were conducted with participants with severe residual effects.

Analysis

Each transcript was read by the researcher, with data analysis commencing following the first interview. This involved a process of initial coding: examining the data line by line and applying initial codes that captured the meaning of the data (Holton, 2007). At this stage, the analysis was particularly focused on development of “in vivo” codes to allow experience to be coded in the participants’ own words. Constant comparative methods were applied throughout the process to identify analytic distinctions; this involves exploring similarities and differences between codes, categories, and themes (Glaser & Strauss, 1967). The smaller initial codes were then integrated into larger, more abstract focused codes that accounted for larger sections of the data. Theoretical codes were applied to explain the relationships between the different conceptual categories. This involves making connections between the categories to form a conceptual model that highlights how the categories and subcategories link together. The researcher utilized storying and diagramming during this stage, to consider relationships between the categories to develop the end theory. The researcher continually looked for “negative cases”; where participant data departed from or challenged an emerging theme. Participant 4 had far greater residual effects and experience of an ICU. This interview produced outlying data which led to alternate codes and a refinement of the theory that had been developed up to that point.

Ethical Considerations

Participants were assigned a unique identification number to protect their identity, indexed in a key document throughout the study to identify participants and their information. All identifiable information was removed from the transcripts, and any quotations used were anonymized. Participants were informed on the information sheet, consent form, and orally by the researcher that their data would remain confidential with the sole exception of any participant indicating risk to themselves or others. Participants were informed that if this occurred then the researcher would contact her academic supervisor to discuss.

The researcher acknowledged that talking about a personal experience of GBS could be upsetting, so routinely verbally checked the participants’ well-being during the interview and utilized her skills in managing emotional distress at the time of the interview to assist participants who chose to discuss upsetting experiences related to GBS. Participants were also provided with contact details of professional services on a debrief sheet.

Quality

To monitor originality and maintain theoretical sensitivity, memos, in-vivo codes, and triangulation were used; to ensure that the researchers remained attuned to the emerging data and continued data collection until the categories were “theoretically sufficient.” Through this process, the end model was developed. The analysis was reviewed by the second author to ensure that agreement was reached for themes. The end model was discussed with all co-authors throughout the analysis.

After the theory was developed, all participants were sent a letter outlining the theory. They were invited to contact the first author to discuss the theory and provide feedback. Validation interviews were subsequently conducted with eight of the participants (Morse, 2007). Eight participants gave feedback and reiterated the themes within the model and confirmed that it accounted for the psychological effects of GBS.

Results

Overview

Three central themes emerged from the analysis, presented in bold in Figure 1. These provide an explanatory account that aims to explain the psychological effects of GBS: “Loss, determination, and adjustment”; “The unknown”; and “Navigating GBS.” As depicted by the oscillating arrow in the center of the model, “Loss, determination, and adjustment” and “The unknown” are experienced as a dual process: individuals oscillate between loss and adjustment and experiencing uncertainty, respectively. “Navigating GBS” highlights the mechanisms that assist with managing and journeying through GBS: “Receiving support,” “Obtaining knowledge,” and “Experiencing hope.” This factor is represented by a triangle to illustrate the three processes, the combination of which helps in dealing with the uncertainty around the illness and thus enables individuals to develop a fighting spirit and to strive toward being independent again. Participants reflected both on the experience of the initial effects of the illness and on their recovery journey. The themes are now explored in more detail.

Figure 1.

The psychological effects of GBS.

Loss, Determination, and Adjustment

Individuals with GBS are subjected to sudden physical changes within their bodies that lead to a loss of autonomy. This is emotionally difficult, characterized by a strong dislike of being dependent on others whilst being mentally aware of what is happening. Consequently, they develop a determination to change their situation, to become independent again, and a fighting spirit emerges. Individuals aim to reconstruct their lives and return to their former independent selves. However, the physical effects are long lasting and many experience residual effects. This requires them to adjust, to maximize their independence and adopt a changed outlook on life:

Who you are is changed … who you are is being taken away with one hand, but who you are in another way is being totally changed around and given back to you on the other hand. You’ve been deconstructed and restructured and put together without the use of this, that and the other. (P9)

Three processes were described within this theme: sudden physical change and loss of autonomy, determination to regain independence, and restructuring and adaptations.

Sudden Physical Change and Loss of Autonomy

Paralysis is the main initial symptom of GBS. Individuals initially experience a gradual weakness and do not recognize the severity of their illness. The paralysis is experienced as sudden and generates feelings of surprise and shock:

At first I think: “it’s a shock to the system and what am I going to do without that part, without my legs, without my arms?” (P9)

Therefore, they become dependent on others, something which is strongly disliked:

And the worst thing was, I mean I was running around, doing my own thing and then one of the first things that struck me right, I had a lovely boy, who couldn’t have been any more than 26, wiping my bottom. Devastated me. (P2)

Individuals question why GBS happened to them. As well as this cognitive response, they experience a range of negative emotions around their paralysis, for example, worry and fear:

I was starting to panic … Will I stop breathing? You know, you have weird sensations happen to you when you’re paralyzed. (P8)

Determination to Regain Independence

Individuals with GBS want to regain their independence and this is driven by not wanting to be dependent, not wanting to be a burden on others, and wanting to be with their families:

I don’t like being a burden to anybody. My daughter and my son, they have enough to look after with their lives and work without having to worry about me. (P6)

I couldn’t wait to get out of that hospital and come home to my family. … I missed my bairns so much. It was unbelievable how much my heart ached to get home and have them up on the bed and give cuddles. (P9)

Individuals develop a fighting spirit and push themselves in order to regain their independence and to get themselves back:

And the thought of somebody having to do things for me, I thought: “well I don’t want this.” And I think that’s what give me the fight: “It’s not gonna get me. I’m gonna fight this.” (P3)

Restructuring and Adaptations

Individuals are shaped and influenced by their experience of GBS. For some, the ability to walk is regained even though there is ongoing weakness which impacts their strength. For others, the effects are more severe, as they live with ongoing symptoms:

To me I’ve still got Guillain–Barré, I’ve still got the residue of my legs. I’m not over, I’m over the worst but I’m still living with it. … It’s there every day. (P8)

Individuals also make adaptations to increase their independence:

I’ve adapted to eating with my fingers instead of a knife and fork. I can use a spoon as a shovel. I can basically feed myself, but you wouldn’t take me to a posh restaurant just yet. But I’ve had to adapt my body otherwise my husband would be feeding me forever. (P10)

A different outlook on life can develop which reflects a changed confidence in ability, alongside an appreciation for life:

It’s made me realize things are just material, you’ve got to get on with your life and enjoy your life really. Make the most of it. (P6)

The Unknown

Another factor relating to the psychological effects of GBS is the unknown. This starts with individuals not knowing what is wrong at the beginning of their illness and wanting to understand it. When a diagnosis of GBS is given, individuals enter an unknown realm facilitated by the lack of knowledge around GBS. This leads them to question their recovery. The uncertainty around GBS leaves a lasting impact as individuals continue to not know, following discharge from a hospital setting. One consequence of the unknown is wondering if things could have been different. The data indicated three processes within this theme: experiencing the not knowing, facing uncertainty, and continuing to not know.

Experiencing the Not Knowing

When individuals experience weakness and numbness in their limbs, and paralysis, they do not know why this has occurred or what is wrong. “Not knowing” is a frightening position:

You are frightened, frightened because you don’t know what it is. (P8)

Individuals subsequently seek help from professionals. Their expectation for answers is heightened due to being in a hospital setting. When further understanding or a diagnosis is not provided, along with a realization that professionals do not know much about GBS, this leads to feelings of frustration:

Even the doctors in the hospital: “It’s his brain, it’s balance, it’s this and that and the other” … They can’t tell me what’s up with me; I thought: “Well I’m in the place that’s supposed to know. Why haven’t you diagnosed it quicker?” (P5)

Facing Uncertainty

When individuals receive a diagnosis of GBS, they initially do not know what this is:

I remember the neuro consultant telling me. I’d never heard of it, didn’t know what he was talking about … I couldn’t think of anything worse, something that destroys all your nerves in your peripheral nervous system. (P4)

Individuals face uncertainty due to the unknown course of GBS. They are unable to obtain concrete information about their recovery which leads them to question what their recovery will look like:

You don’t know the outcome … anything you can die with, but something that nobody’s ever heard of, it’s worse isn’t it? Cos they don’t know. (P6)

Continuing to Not Know

The uncertainty around GBS continues once individuals return home. For those who are continuing to strive to regain their physical ability and their independence, there is ongoing uncertainty around recovery:

Its uncertainty all the time because you don’t know … nobody says to you: “Right you’ve got Guillain–Barré, you’ll always have Guillain–Barré” or: “No it’s not Guillain–Barré, it’s just nerve damage caused by the Guillain–Barré.” There’s nobody qualified enough to say to you what it is. (P8)

Individuals with GBS hear their doctor say that it is unlikely they will experience GBS again; however, the lack of knowledge and the lengthy wait they endured for their diagnosis leads them to question the validity of this information:

They say that it won’t come back … If they don’t know what’s there, then how do they know it won’t come back? (P3)

As a consequence of not knowing, individuals wonder if their experience of GBS could have been different. This is impacted by the delay some individuals experience in receiving a diagnosis of GBS, along with the belief that an earlier diagnosis could have led to a more positive outcome:

… this is no reflection on the people doing it, I always thought if I’d been diagnosed earlier I might not have got as advanced with it as I did. (P7)

Navigating GBS

A third process, Navigating GBS, highlights the mechanisms that assist with managing and journeying through GBS. Individuals with GBS draw on support from their family, friends, professionals, and fellow patients; and witnessing their own physical recovery to provide knowledge, support, and hope. The amalgamation of these three processes helps in dealing with the uncertainty around the illness and thus enables individuals to develop a fighting spirit and to strive toward being independent again. This theme consisted of the following processes: receiving support; obtaining knowledge, and experiencing hope.

Receiving Support

Individuals are grateful for the practical and emotional support that they receive from their family and friends in alleviating loneliness, providing assistance and encouragement:

But he was there and held my hand even though I couldn’t feel his hand. (P8)

They [friends] have done a lot of it for me and that’s great. Takes the pressure off me. … Just tiny things … It’s nice to know there’s people behind you, supporting you. (P10)

Some draw upon their faith as a source of comfort and strength:

I think also its very helpful if you’ve got a faith, which I have. You know that you’ve got somebody walking with you who gives you strength and promises to be with you. An inner strength, a comfort … (P10)

Individuals communicated with other individuals with GBS whilst in hospital and in the community. This communication is highly valuable as it provides a collective community in which support, advice, and encouragement can be shared:

… they tell you what they’ve gone through and what they’ve tried and sometimes you pick up tips and you can give advice on what you’ve tried … you become a family really. (P4)

Obtaining Knowledge

In an attempt to reduce the uncertainty around GBS and to alleviate feelings of worry and fear, individuals desperately seek information about the nature and prognosis of their condition:

If you dig deep enough and you ask enough questions you do get answers … I used to be forever asking them [professionals] what’s next to come with GBS, what was gonna happen in the long run. (P9)

Experiencing Hope

As the nerves begin to recover, individuals experience a body part moving again. Witnessing regained movement is interpreted as a step forward, and this is a source of hope:

I walked four, five steps. And I cried after that because I thought: “I’m going to do it” … There was going to be no stopping me. (P8)

Discussion

This study aimed to build an understanding of the psychological effects of GBS. The model uniquely integrates the psychological effects of GBS, as identified by individuals with a diagnosis of GBS themselves. The model is based on a heterogeneous sample with regard to gender and time since diagnosis.

The model has practical significance as it articulates an oscillating process between loss, determination, and adjustment and experiencing the unknown. Furthermore, it establishes the processes that are involved in attempting to manage the psychological effects, offering an insight into how individuals navigate the illness. These understandings can improve current support and treatment. The model demonstrates the psychological journey of GBS, enabling predictions to be made as to what psychological effects individuals could be encountering at various points of their physical recovery.

At the start of their illness, individuals describe becoming weaker, yet not recognizing that this was the beginning of GBS. Being mentally aware throughout paralysis leads to psychological distress. Individuals question why GBS had happened, and experience panic, worry, frustration, and anger. Other studies of GBS patients have reported that the paralysis associated with the illness, alongside being cognitively intact, leads to feelings of terror, shock, anxiety, stress, depression, and hopelessness (Cooke & Orb, 2003; Forsberg et al., 2008; Weiss et al., 2002). The resulting dependency on others is difficult for GBS patients. Rabinowitz and Arnett (2013) described that a loss of functional autonomy threatens personal identity and self-esteem. This could account for the strong dislike of dependency expressed by the participants in this study. The physical losses create a fighting spirit to overcome GBS and be independent again.

GBS leaves a lasting impact on individuals, and this supports the literature regarding a wide variety of residual effects of differing severity (Bernsen et al., 1999; Bernsen et al., 2005; Forsberg et al., 2008) and ongoing psychosocial impacts 3–6 years post onset (Bernsen et al., 1997). The residual effects of GBS result in a determination to adjust, with participants making adaptations to enhance their physical independence. Forsberg et al. (2015) described how GBS patients are forced to develop different strategies and plan to overcome their physical limitations.

Livneh and Antonak (1997) noted that adjustment to a loss of ability is “an evolving, dynamic, general process through which the individual gradually approaches an optimal state of person-environment congruence” (p. 8) The oscillation between loss, determination, and adjustment and experiencing the unknown resonates with the concepts of loss- and restoration-oriented coping described by the dual process model of bereavement (Stroebe & Schut, 1999). Loss-orientation refers to the bereaved person’s focus on, and appraisal of, an aspect of the loss experience itself. This therefore involves grief work and the person experiencing the pain of the loss. Restoration-orientation refers to a focus on secondary stressors that are consequences of the bereavement and reflects the process of reorienting oneself in a changed world (Stroebe & Schut, 2010). Both orientations are associated with distress and anxiety. Individuals can oscillate between loss-oriented and restoration-oriented coping when managing loss, and the emotional response to loss can change daily; with the oscillation being an integral part of the coping process.

Participants described not knowing what was wrong at the beginning of their illness when they became paralyzed. This has been described in previous studies (Eisendrath et al., 1983; Forsberg et al., 2008; Gregory, 2003) and is a frightening experience. Encountering GBS involves facing an ambiguous, complex, and unpredictable condition, therefore uncertainty is likely. This leads individuals to question any subsequent physical improvements. The need for knowledge is strong when navigating the psychological effects of GBS. Receiving information reduces uncertainty and anxiety. This suggests that psychological interventions focusing on increasing individuals’ ability to tolerate uncertainty could be useful in supporting psychological recovery.

The model details the processes that help: support, knowledge, and hope. Weiss et al. (2002) reported that 90% of participants found that regular contact with their relatives was helpful in coping with the psychological problems caused by GBS during their stay in an ICU. The current study extends this by outlining the need for contact with family and friends during rehabilitation and in the community. Contact with other patients with GBS also proved to be a source of support. This suggests that interventions such as patient-led support groups could be helpful.

Mishel (2014) noted that as experts, healthcare providers could reduce uncertainty by providing information and promoting confidence in their clinical judgment. In the current study, the lack of initial information from professionals and subsequent lack of trust decreased participants’ confidence about possible reoccurrence of the illness.

Hope was a positive factor in navigating the physical and uncertain journey of GBS. Witnessing a physical movement from the body triggered hope. Madan and Pakenham (2014) demonstrated that hope was a protective coping resource, predicting better life satisfaction, positive affect, and lower depression.

It is of note that there is no reference to pain within the model generated by this study. Participants did refer to GBS as a painful experience, both at the beginning (Eisendrath et al., 1983; Forsberg et al., 2008) 12 months later (Merkies & Kieseier, 2016) and 10 years later (Rice, 1977). Participants in the current study were interviewed 18–48 months post diagnosis, yet pain did not emerge as a theme. It could be that a focus on describing the experience of GBS from onset through to recovery allowed for the expression of more prominent, wide-ranging psychological effects to emerge (losing and striving to regain the physical self and managing uncertainty) rather than the expression of pain.

Limitations and Future Research

The study adopted a social constructionist approach, where the model was co-constructed by both the participants and the researchers. Therefore, the results can be viewed as an understanding of the psychological effects of GBS rather than being generalizable to other populations.

Diversity of participants is a key aim in GT to facilitate theory development. The limited age range of the participants is recognized, but this is commensurate with the fact that GBS affects older rather than younger people (Davidson et al., 2010). Further studies are required that include individuals experiencing GBS in an inpatient setting and with individuals experiencing residual effects that affect verbal communication. It is also acknowledged that no information was gathered from participants regarding any other illnesses or disabilities, other than the effects of GBS. The lack of information regarding participant employment, before and after their GBS diagnosis, is also a limitation.

Regarding severity, there was no formal measure used to ascertain the severity of the illness (apart from whether or not participants were admitted to intensive care) or the residual effects of the illness, only self-report from participants. It would be interesting to further consider the impact of residual effects on the perceived psychological effects of GBS. Given the rarity of GBS, individuals were recruited if they had received a diagnosis of GBS in the preceding 5 years. Recall is generally a limitation within qualitative studies. However, this was mitigated by the constant comparative method; in which emerging codes were compared and contrasted across transcripts, including individuals with a diagnosis within the last 2 years.

Further research is required to elaborate and confirm the theoretical model. In addition, research investigating the impact of receiving psychological support during GBS onset and recovery is warranted. Given the significance of receiving help and support, future research could focus on the processes of this and explore how family, friends, and professionals manage the psychological effects of the illness. In addition, the applicability of the dual process model of bereavement (Stroebe & Schut, 1999, 2010) to understand the psychological processes involved in adjusting to illness or disability could be explored. Further research could focus on how individuals’ psychological well-being continues longer term, and what processes contribute to further adjustment and growth.

Clinical Implications

Clinicians can be aware of the psychological effects of GBS and the emotions that individuals experience. It is important to assess, recognize, and discuss these feelings with the person and other members of the care team. This involves being attuned to distress and being mindful of the expression of anger, anxiety, and low mood that patients may feel.

Participants expressed a determination to recover. Clinicians can assist individuals to develop their own fighting spirit, through increasing their self-esteem and fostering confidence. It is important to be mindful of an individual’s physical ability and likely prognosis when encouraging the development of a fighting spirit. Not all individuals will make a positive recovery, and there is risk inherent in striving toward an unrealistic outcome.

Adjustment is key to moving toward recovery. Acceptance and commitment therapy (ACT) is centered on living a meaningful life and working toward values-based living. A key premise is acceptance: an acknowledgment of, and willingness to, allow thoughts and feelings (Harris, 2006). Given that GBS results in paralysis and dependency, individuals could be encouraged to explore their values and identify what it is that gives them meaning and purpose; particularly as participants in this study found dependence on others distressing. Patients could be reassured by clinicians that dependency is expected with paralysis and given as much choice as possible to maintain their autonomy.

Uncertainty in GBS is inevitable: there is a lack of clarity regarding etiology and recovery. Also, given that it is a rare condition, clinicians need to have accessible information on GBS in order to improve their own and subsequently an individual’s knowledge of the condition. Participants also expressed the importance of knowledge, to foster determination to recover and to generate hope. Thus, it is important that information is provided at every point of the GBS journey. This includes an explanation of the presenting symptoms and tentative suggestions as to what the possible causes may be, an explanation of the tests that need to be conducted, an explanation of what GBS is, and recognition that it is a rare illness with a variable outcome. There are prognostic indicators that can provide a realistic prognosis to individuals with GBS (Song et al., 2017; Willison et al., 2016). Websites are also useful, for example, GBS/CIDP Foundation International (https://www.gbs-cidp.org/).

Hope is central to overcoming the psychological effects of GBS. Individuals could be encouraged to develop goals which are meaningful. This is commensurate with Snyder’s (1994; 2002) account of hope, where hope involves the perception that goals can be met.

Given the positive benefit of social support, contact with family members and friends should also be encouraged. The participants in this study also described the benefit gained from interacting with other GBS patients. A supportive peer group on a ward or in the community could facilitate this.

Ethical Statement

Ethical Approval

This study was approved by Teesside University Research Governance and Ethics Committee, School of Health and Social Care, Study Number 023/16; and by the NHS Health Approval Authority, REC reference 16/SC/0368, IRAS project ID 182997.

Informed Consent

All participants gave informed consent to take part.

ORCID iD

S. J. Summers https://orcid.org/0000-0002-9000-8588