Living Through Acute Helplessness and Ongoing Recovery: A Phenomenological Study of Patients with Guillain-Barré Syndrome Undergoing Therapeutic Plasma Exchange

Abstract

Background

Guillain-Barré Syndrome (GBS) is an acute neurological disorder marked by progressive weakness and potential respiratory failure, frequently requiring intensive care and Therapeutic Plasma Exchange (TPE). Although prior research has investigated the clinical impact and quality of life among GBS patients, most studies have examined physical and psychological dimensions separately. Few studies have addressed the meaning of patients’ lived experiences within a biopsychosociospiritual framework, especially from the acute phase through recovery in the context of TPE.

Purpose

This study aimed to explore the lived experiences of patients with GBS undergoing TPE across the acute phase and recovery within the clinical and sociocultural context of a developing country, Indonesia.

Methods

A qualitative, descriptive-phenomenological design was employed at a national referral hospital in Indonesia, a developing-country setting with limited access to critical care and rehabilitation resources for GBS. Seven patients with GBS undergoing TPE, followed up to three years post-diagnosis, were purposively recruited. Data adequacy was achieved when no new themes emerged after the sixth interview, and one additional participant was included to confirm saturation. Semi-structured interviews were conducted between September and December 2025 at mutually agreed locations. Data were analyzed using the Colaizzi phenomenological method, and member checking enhanced credibility.

Results

Four main themes emerged: (1) bodily disruption and meaningful recovery; (2) emotional distress and self-acceptance; (3) communication barriers and efforts to rebuild relationships; and (4) spiritual distress and resilience. These themes illustrate the multidimensional journey from acute uncertainty to the reconstruction of meaning in life during recovery.

Conclusion

The lived experiences of GBS patients undergoing Therapeutic Plasma Exchange demonstrate a progression from acute helplessness to sustained recovery. Recovery encompasses not only physical improvement but also the reconstruction of self-meaning, social relationships, and spiritual strength in adapting to life changes caused by the disease. These findings underscore the need for a holistic, patient-centered nursing approach throughout the illness and recovery.

Introduction

Guillain-Barré Syndrome (GBS) is a rare, immune-mediated neurological disorder affecting the peripheral nervous system and is the leading cause of acute flaccid paralysis worldwide.^1,2 The global incidence is estimated at 1–2 cases per 100,000 people annually.³ GBS typically presents with rapidly progressive, symmetrical muscle weakness, reduced or absent tendon reflexes, and varying sensory and autonomic dysfunction. Severe cases may involve respiratory muscle weakness, leading to respiratory failure and the need for intensive care and mechanical ventilation.^2,4 Although rare, GBS causes significant morbidity. About 20–30% of patients require ventilatory support during the acute phase, and many survivors experience long-term disability, such as residual weakness, neuropathic pain, fatigue, and impaired mobility.^1,5 The disease progresses through acute, plateau, and recovery phases. Recovery often takes months to years and frequently results in lasting physical and psychosocial effects that reduce quality of life (QoL).⁵

GBS management focuses on supportive care and immunomodulatory therapies. Intravenous immunoglobulin (IVIG) and therapeutic plasma exchange (TPE) are first-line treatments for severe cases.^6,7 TPE accelerates neurological recovery by removing circulating autoantibodies and inflammatory mediators involved in nerve injury.⁶ However, TPE can be physically and emotionally challenging, particularly during the acute phase, when patients may face sudden paralysis, intensive care admission, invasive procedures, and uncertainty about prognosis and recovery.

GBS impacts patients beyond neurological symptoms. Biologically, it often causes severe muscle weakness, impaired mobility, neuropathic pain, and prolonged fatigue. Psychologically, the sudden and rapid paralysis can lead to fear, anxiety, helplessness, uncertainty, and loss of bodily control. Socially, GBS may disrupt family roles, relationships, employment, and independence during both the acute and recovery phases.^8,9 Qualitative studies describe GBS as a profoundly disruptive illness, marked by physical suffering, emotional distress, and major adjustments in daily life.⁸

Serious illness and loss of physical function can elicit existential and spiritual responses; patients may seek meaning, reflect spiritually, or rely on religious beliefs to cope with suffering and uncertainty.¹⁰ Conversely, severe illness can cause spiritual distress, including hopelessness, loss of meaning, existential suffering, or disruption of prior beliefs and values.¹¹ Within critical care specifically, spirituality functions as an essential coping resource: patients and families frequently draw on spiritual and religious practices to manage the acute stress of intensive care, and respecting these beliefs is considered a core component of patient-centered critical care nursing.¹² Emerging systematic review evidence further indicates that structured spiritual care interventions in the ICU can improve psychosocial well-being, reduce anxiety, and enhance patients’ sense of comfort, alongside measurable benefits for physiological stability and length of stay.¹³ Despite this evidence, spiritual care remains inconsistently integrated into routine critical care practice, and nurses often report feeling inadequately prepared to address patients’ spiritual needs due to time constraints and limited training.¹² Additionally, previous reviews reported that most studies investigate experiences at a single stage of illness, typically during rehabilitation or post-recovery, which limits understanding of the entire trajectory from acute onset to recovery.¹⁴ A recent scoping review highlighted the scarcity of evidence on spiritual experiences among patients with GBS, as most studies focus primarily on physical, psychological, and social aspects.¹⁴ Despite growing recognition of holistic, patient-centered care, the spiritual aspects of illness remain underexplored specifically in GBS recovery.

These biopsychosociospiritual vulnerabilities are likely to be further intensified in resource-constrained healthcare settings, such as those typically found in developing countries. Constrained ICU staffing and nurse-to-patient ratios may reduce the frequency and depth of therapeutic communication during the acute phase, thereby amplifying patients’ sense of helplessness, isolation, and loss of bodily control.¹⁵ Limited availability of advanced monitoring equipment and structured psychosocial or spiritual care services may further delay the recognition of emotional and existential distress, leaving biopsychosociospiritual needs inadequately addressed throughout the illness trajectory.¹⁶ Within this context, understanding how GBS patients navigate their illness experience from the acute phase through recovery becomes particularly salient, as the interplay between clinical vulnerability and structural resource limitations may shape both the intensity and the trajectory of suffering and adaptation.

This study offers novelty in three key areas. First, it examines the lived experiences of patients with GBS longitudinally, from acute intensive care through recovery, providing deeper insight into the dynamic nature of illness experiences. Second, it highlights therapeutic plasma exchange as a central treatment context shaping patients’ experiences, a perspective rarely addressed in previous qualitative GBS research. Third, it emphasizes spirituality as a core element in patients’ meaning-making and recovery, addressing a significant gap identified in prior evidence syntheses.¹⁴ As a result, the study provides a more comprehensive understanding of the lived experiences of patients with GBS in critical care within a developing country. It offers an empirical foundation for nursing care models that address patients’ biopsychosocial and spiritual needs. Therefore, this study aims to explore the lived experiences of patients with Guillain-Barré Syndrome undergoing therapeutic plasma exchange from the acute phase through recovery.

Materials and Methods

Research Design

This study used a descriptive qualitative phenomenological design to explore the lived experiences of patients with GBS who underwent TPE. This approach was chosen to gain an in-depth understanding of the essential meanings in individuals’ experiences as they confront a complex and potentially life-threatening illness.¹⁷ The study aimed to capture how patients perceived, interpreted, and navigated their illness from the acute phase through recovery. Furthermore, to ensure methodological rigor, transparency, and high-quality reporting of qualitative data, this study was structured and reported in strict compliance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines.

Participants and Setting

The study involved patients with a history of intensive care admission for Guillain-Barré Syndrome at Dr. Hasan Sadikin General Hospital, Bandung, Indonesia. Data were collected from September 24 to December 5, 2025, after receiving ethics committee approval and hospital administration’s permission.

Participants were recruited through purposive sampling based on predefined criteria. Inclusion criteria were: (1) first-time diagnosis of Guillain-Barré Syndrome, (2) receipt of Therapeutic Plasma Exchange during intensive care, and (3) being in the recovery phase within three years of discharge. Exclusion criteria were: (1) impaired consciousness or communication disorders limiting verbal articulation, and (2) a documented history of severe mental disorders that could affect data credibility. Seven participants were included. The sample size was determined by data adequacy and thematic saturation. No new themes emerged during the sixth interview, and one additional participant was recruited to confirm saturation. The final interview confirmed repetition and consistency of identified patterns and themes.

Data Collection

Data were collected through in-depth semi-structured interviews with participants who had received intensive care for GBS. The principal researcher, with a nursing background and qualitative research experience, conducted all interviews in Bahasa Indonesia. Interviews were audio-recorded with participants’ consent, lasted 45–60 minutes, and were transcribed verbatim for analysis. Open-ended questions encouraged participants to describe their experiences in detail. Each interview began with the primary question:

Can you describe your experience of living with Guillain-Barré Syndrome and undergoing treatment in the intensive care unit?

Data collection and analysis occurred concurrently. Preliminary analysis followed each interview to identify emerging meanings and provisional themes, guiding subsequent interviews. Data adequacy was reached when no new themes emerged. Saturation was identified during the sixth interview and confirmed with an additional interview. Field notes were used alongside interview data to document nonverbal expressions, emotional responses, contextual interactions, and the researcher’s observations. To enhance reflexivity and minimize bias, the researcher engaged in continuous self-reflection and bracketing throughout data collection and analysis.

Data Analysis

Colaizzi’s phenomenological method was employed for data analysis, as it offers a rigorous and systematic analytical framework and incorporates participant validation through member checking.¹⁸ The analysis proceeded through several iterative stages: repeated reading of interview transcripts to achieve a comprehensive understanding of participants’ experiences, identification of significant statements related to the phenomenon, formulation of meanings from these statements, clustering of meanings into themes, development of an exhaustive description of the phenomenon, and synthesis of the fundamental structure of the lived experience. In the final stage, findings were returned to participants for validation to ensure that interpretations accurately reflected their experiences.

Trustworthiness

Rigor and trustworthiness were ensured by applying the criteria of credibility, transferability, dependability, and confirmability.¹⁹ Credibility was established through member checking, in which participants reviewed and confirmed the researcher’s interpretations to ensure alignment with their lived experiences. Transferability was supported by providing detailed descriptions of the research context, participant characteristics, and the phenomenon under study, enabling readers to assess the applicability of findings to similar contexts. Dependability was maintained through an audit trail documenting all stages of the research process, including methodological decisions, interview procedures, coding development, and analytical processes. Confirmability was achieved by grounding findings in participants’ narratives and by maintaining transparency through interview transcripts, field notes, and reflexive documentation, thereby enabling systematic review and traceability of the analytical process.

Ethical Considerations

The study was conducted in accordance with the principles of the Declaration of Helsinki. Ethical approval was granted by the Health Research Ethics Committee of Dr. Hasan Sadikin General Hospital Bandung (approval number DP.04.03/D.XIV.6.5/402/2025, dated August 29, 2025). Before participation, all individuals provided written informed consent after receiving a comprehensive explanation of the study objectives, procedures, potential benefits, and confidentiality measures. Participants were informed of their right to withdraw from the study at any time without consequence. To ensure confidentiality and anonymity, all participant data were de-identified using participant codes and stored securely. Additionally, all interview excerpts published were anonymized to prevent participant identification. The participants informed consent included publication of anonymized responses/direct quotes.

Results

Participants Characteristics

This study involved seven participants, patients diagnosed with GBS who had undergone TPE therapy during intensive care (see Table 1). All participants were in the recovery phase after experiencing the acute phase of the disease, with a period of up to 3 years since their initial diagnosis. Participants varied in age, gender, and disease history, providing a diverse picture of the GBS experience. The majority of respondents were female and Muslim. Their ages ranged from 21 to 60 years.

Table 1.

Participants Characteristics

Participants	Gender	Age	Religion
P1	Female	30 years	Islam
P2	Female	25 years	Islam
P3	Female	21 years	Islam
P4	Male	30 years	Islam
P5	Male	46 years	Christian
P6	Female	60 years	Islam
P7	Female	48 years	Islam

Primary Findings

A comprehensive analysis of the interview transcripts revealed a multidimensional framework of participants’ experiences. Through systematic grouping of related meanings, the raw data were organized into four core themes and 14 distinct subthemes (Figure 1). These themes delineate the entire journey of GBS patients undergoing TPE, from the initial physical crisis to long-term spiritual and social transformation. Table 2 presents the complete qualitative framework, followed by a detailed explanation of each theme. The four themes and 14 subthemes comprehensively reflect the participants’ experiences.

Figure 1.

Thematic analysis of findings.

Table 2.

Analysis of Finding

Core Theme	Subtheme	Formulated Meanings
Theme 1: Bodily Disruption and Meaningful Recovery	1. Acute-Phase Bodily Disruption	Sensory deficits (numbness, paresthesia); progressive motor weakness; loss of basic functional mobility; mechanical ventilator dependence; dysphagia (difficulty swallowing); altered levels of consciousness.
	2. Therapeutic Suffering and Burden	Severe physical discomfort during procedures; intense rigors (shivering); pyrexia (fever); dizziness and floating sensations; excruciating pain from vascular access site insertion; prolonged duration of therapy leading to exhaustion.
	3. Positive Therapeutic Acceptance	Informed consent comprehension; processing procedural mechanics of TPE; smooth procedural execution; psychological compliance with clinical interventions.
	4. Meaningful Recovery and Adaptation to Residual Symptoms	Gradual re-establishment of physical autonomy; tangible therapeutic benefits; significant clinical improvement; attenuation of acute distress; adjustment to chronic residual deficits (stiffness, fatigability, tremors).
Theme 2: Emotional Distress and Self-Acceptance	5. Diagnostic Ambiguity and Somatosensory Confusion	Initial disorientation at symptom onset; seeking emergency medical aid; navigating diagnostic barriers and delay; ignorance of clinical triggers; physical/emotional burnout during the diagnostic window.
	6. Profound Psychological and Emotional Distress	Severe disappointment, anger, and frustration over loss of bodily autonomy; ICU-related trauma and invasive fears; acute insomnia; mental and emotional depletion.
	7. Reaching Illness Acceptance	Reframing illness as a life lesson/admonition; active accommodation of the therapeutic regimen; adherence to clinical protocols; perceived institutional privilege/luck; deep therapeutic trust in the medical staff.
Theme 3: Communication Barriers and Relational Re-establishment	8. Somatic-Driven Communication Impairments	Mechanical restriction due to endotracheal tube (ETT) intubation; clinical disconnect with nursing staff; severe loss of self-confidence; altered perception of relational networks; expectations for increased medical sensitivity.
	9. Social Isolation and Withdrawal Trajectories	Enforced separation from familial structures (eg, pediatric visit restrictions); profound loneliness; perceived clinical neglect; deliberate psychosocial withdrawal due to physical vulnerability.
	10. Active Reconstruction of Social Relations	Cognitive reframing of perceived relational letdowns; emotional self-regulation regarding medical care; profound institutional gratitude; progressive social reintegration concurrent with somatic recovery.
Theme 4: Spiritual Distress and Spiritual Resilience	11. Acute Spiritual Distress	Imminent existential dread and fear of mortality; transient suicidal ideation driven by severe helplessness; spiritual anger toward the Divine; absolute existential hopelessness and refusal to pray.
	12. Emergence of Illness-Based Reflection	Emotional transition and adaptive denial; persistent struggle for hope; existential audit of personal mortality and religious deeds; critical evaluation of life as an ongoing trial.
	13. Spiritual Awakening and Agency	Re-emergence of hope for autonomy; instrumental motivation overshadowing medical trauma; proactive willpower; embracing existential accountability and familial duty.
	14. Transformed Existential Meaning	Reframing pathology as a purposeful trial; heightened awareness of holistic health; somatic self-compassion; intentional spiritual alignment and closeness to God.

Theme 1: Bodily Disruption and Meaningful Recovery

This theme outlines the physiological progression of patients with GBS from the acute phase through recovery. In the early acute phase, participants reported progressive bodily disruptions, such as tingling, numbness, stiffness, muscle weakness, and, in some cases, respiratory impairment that necessitated intensive care. During the acute treatment phase, patients remained physically unstable and experienced discomfort associated with the TPE procedure. As clinical conditions improved, participants developed more positive perceptions of the therapy. In the recovery phase, patients demonstrated gradual physical improvement while adapting to persistent residual symptoms.

Subtheme 1: Acute-Phase Bodily Disruption

During the acute phase, participants experienced rapid, progressive bodily disruptions. Initial manifestations presented as sensory deficits, such as paresthesia, tingling, and numbness in the extremities, which swiftly escalated into profound muscular weakness. This progression stripped patients of basic functional mobility, leaving them unable to stand, walk, or grip objects independently.

Suddenly, there was this tingling sensation in the palms of my hands. It did not go away for two days. Then, the next day, when I woke up, my hands were completely weak. (P1.1)

As the neuromuscular impairment spread, patients lost total functional autonomy, requiring complete assistance. In severe instances, respiratory failure occurred, mandating immediate mechanical ventilation and endotracheal intubation within the ICU. Severe bulbar involvement causing dysphagia was also noted, requiring nasogastric tube (NGT) insertion for nutritional intake. Some participants also experienced altered levels of consciousness, leaving them unaware of their immediate surroundings.

My arms and legs were totally weak, I was just bedridden… In the hospital, it deteriorated further; even pulling myself from a lying to a sitting position was impossible. I had to be physically lifted. (P3.3)

I do not remember it clearly, it felt like I was sedated and placed on a ventilator… entering the MICU. (P1.3)

Even drinking milk was difficult because I could not swallow properly. Ultimately, they had to insert an NGT. So, by the time I was transferred to this emergency department, the NGT was already in place. (P1.2)

I do not know, suddenly they just inserted that tube (intubation); I was unconscious, I do not remember. (P6.5)

Subtheme 2: Therapeutic Suffering and Burden

While TPE was recognized as vital for recovery, the procedure caused significant physical discomfort. Participants commonly experienced intense rigors (uncontrollable shaking) and high pyrexia during or after sessions. This was compounded by vertiginous or floating sensations and dizziness. Furthermore, the insertion of large-bore vascular catheters generated excruciating localized pain, elevating anxiety. The prolonged duration of each session required patients to remain immobile for hours, causing severe physical fatigue and muscle soreness.

Tremor, shivering, and hot flashes. (P2.14)

Fever, dizziness, and nausea. (P7.24)

I experienced shivering at its absolute worst. It felt like no matter how many heavy blankets were piled on top of me, I remained freezing cold. At the same time, I felt a floating sensation, accompanied by dizziness. (P1.7)

The most painful part was definitely when they placed the line right here [pointing to the neck area]; when it was punctured, it hurt immensely. (P4.13)

It went smoothly, thank God, but at the very beginning, the flow kept clotting, extending the session up to 12 hours. (P2.19)

The procedure took quite a long time, several hours per session. It was very exhausting and stiff because I had to keep facing left the entire time. (P3.6)

Subtheme 3: Positive Therapeutic Acceptance

Despite procedural burdens, patients developed positive therapeutic acceptance after processing the medical details provided to them and their families. Recognizing the necessity of TPE, participants consciously followed medical advice and adhered to clinical protocols, which provided reassurance and hope of survival.

But eventually, I just complied with whatever the doctor deemed best. If they said the plasma exchange was the best route, I followed the procedure fully. (P5.17)

It went smoothly, thank God. (P2.19)

In my personal opinion, the improvement following the plasma exchange has been vast. Day by day, it just gets better. So, it’s not solely because I was highly disciplined with my exercises, not necessarily. (P4.18)

Subtheme 4: Meaningful Recovery and Adaptation to Residual Symptoms

Post-acute treatment, participants experienced a gradual return of motor function, improving their ability to sit, stand, walk, and perform self-care independently. This recovery progressed incrementally over time. While the benefits of TPE were evident in restoring functional mobility, full somatic restoration remained incomplete. Most participants continued to experience residual symptoms, including persistent numbness, limb stiffness, tremors, and increased fatigue, which required physical and lifestyle adjustments.

Not completely recovered yet. At most, I can only perform basic personal activities now, like putting on my own clothes. I can bathe independently, but my rehabilitation exercises at home still require assistance. (P1.32)

But within about a week—just after three sessions—my body started to feel noticeably lighter. (P3.18)

From day to day after that first plasma exchange, my strength began to return. I started to be able to lift my arms, lift my legs, and sit up independently. That was the turning point where things improved. (P4.14)

However, even up until now, it feels as though my body has completely changed; I experience muscle soreness and fatigue every single day. (P1.41)

But to this very day, I still occasionally experience tremors in my hands, numbness in my fingers, and my joints still feel quite stiff. (P2.52)

Theme 2: Emotional Distress and Self-Acceptance

This theme outlines the emotional trajectory of patients with Guillain-Barré Syndrome (GBS) from the acute phase through to recovery. In the early acute phase, participants reported confusion and uncertainty due to sudden physical changes, particularly before receiving a definitive diagnosis. As the illness advanced, negative emotions, including disappointment, anger, fear, and denial, became prominent. With gradual physical improvement, participants began to transition toward self-acceptance. During the recovery phase, acceptance stabilized, as evidenced by enhanced emotional coping and increased openness to treatment and rehabilitation. The subsequent section details each subtheme.

Subtheme 5: Diagnostic Ambiguity and Somatosensory Confusion

The sudden onset of severe symptoms caused profound initial confusion and disorientation. Because GBS is relatively rare, patients frequently faced diagnostic delays or initial misclassifications (eg, misdiagnosed as acute stroke) in emergency departments, which heightened their emotional distress.

Then I became so confused, like, why is it that when I wake up, even picking up basic items feels so difficult? (P1.1)

Initially, when the numbness started, I consulted a friend who is a doctor; they suggested it might be an electrolyte deficiency, so I drank coconut water. By Thursday, I had to be rushed to Borromeus Hospital. (P4.1)

At first, they told me it was a stroke. But then they realized it wasn’t, because I showed absolutely no clinical response to the stroke medications they administered. (P7.10)

Now that is exactly what I do not know, because of my busy daily routine, I couldn’t pinpoint the cause. Just a week prior, I had a health screening and all my results were perfectly normal. (P5.4)

We entered the emergency department, and waiting for an available inpatient ward took an entire day. Only then did we get a room. (P1.2)

Subtheme 6: Profound Psychological and Emotional Distress

As the diagnosis unfolded, participants faced deep psychological distress. The rapid loss of bodily control triggered strong responses of disappointment, anger, and frustration. The ICU environment, coupled with mechanical ventilation, restricted communication, and invasive procedures, was described as highly distressing and traumatic. This state led to acute insomnia and severe emotional depletion.

Yes, there was disappointment, there was anger, but ultimately I surrendered everything to the Almighty. (P7.40)

What I felt was absolute frustration. It felt like complete, utter despair. (P1.3)

It felt as though my entire body was being compressed tightly from all sides, and the ceiling felt like it was spinning around wildly. In that moment, I started to think, ‘Oh no, I am going to die’. (P4.13)

At night, sleeping was incredibly difficult, almost impossible. Firstly, because my saliva was constantly draining out, and secondly, due to my racing thoughts. There was even a psychiatrist who regularly checked on me. (P1.19)

Subtheme 7: Reaching Illness Acceptance

Over time, participants shifted toward psychological adaptation and acceptance. Illness was reframed not as an unfair punishment, but as a life trial or reminder. This adjustment fostered compliance with clinical protocols, generated a sense of appreciation for timely institutional support, and strengthened trust in the medical staff.

No, I didn’t see it as a punishment; it felt more like I was just being gently corrected or reminded by God. (P3.14)

I simply followed the protocol. (P5.13)

For me, it felt as though my path was smoothed out. In comparison to the patient next to me, whose plasma exchange approval took a long time and faced rejection, my procedure was approved immediately. (P5.19)

Theme 3: Communication Barriers and Relational Re-Establishment

This theme describes changes in patients’ social experiences during GBS. In the acute phase, particularly during intensive care, participants reported social isolation resulting from physical limitations, communication challenges, and separation from family and their broader social environment. These conditions contributed to a sense of disconnection and the loss of previous social roles. As physical health improved and family interactions increased, participants began to re-engage in social activities. During the recovery phase, with support from family members and healthcare professionals, participants gradually reconstructed social relationships and adapted to new social roles. The following section outlines each subtheme.

Subtheme 8: Somatic-Driven Communication Impairments

During intensive care, the presence of an endotracheal tube (ETT) combined with physical paralysis severely restricted verbal communication. Participants often resorted to alternative signaling, such as tapping bed rails, which frequently failed to convey their complex somatic needs, leading to intense frustration. This barrier contributed to a loss of self-confidence and altered their perception of social networks, leaving patients wishing for greater clinical sensitivity to their non-verbal cues.

Yes, I would become incredibly emotional… I could only go ‘tok, tok, tok’ [gesturing tapping on the side of the bed rail] to try and communicate. (P7.60)

It’s hard to describe how confusing it was. Even when I tried to explain things to the nurse, no one could understand. I tried to give the nurse who walked in a code using my eyebrows. She just said, ‘Oh, I’m so sorry, I do not understand’, and then she walked back out. (P1.16)

Because I felt completely insecure; I couldn’t speak, and I couldn’t move at all. I explicitly did not want anyone visiting me. (P1.29)

So, through this crisis, a shift occurred where certain people whom I previously considered close turned out to be distant, while some whom I thought were distant turned out to care deeply. That reality became very clear. (P4.26)

Subtheme 9: Social Isolation and Withdrawal Trajectories

Strict ICU visitation policies amplified interpersonal disconnection. For instance, patients were physically separated from minor children due to hospital rules restricting entry to those under 18 years old. While digital options like video calls offered partial contact, the lack of direct physical presence caused significant loneliness. This environment sometimes led patients to withdraw socially, refusing visitors due to distress over their altered physical appearance or feeling overlooked during busy clinical shifts.

Most of all, my youngest child couldn’t come in to see me. But yeah, we communicated through video calls instead. (P5.45)

It was deeply saddening… I cannot deny feeling entirely alone, even though there was always a nurse on duty in the room. But whenever no one was passing by, I would just stare blankly like this [opening eyes wide] toward the doorway. (P7.56)

Yes, it was so sad… when the nurse was adjusting my IV line, and I tried to give her a code, but it was completely ignored. That felt incredibly painful. [spoken while weeping] (P1.47)

I did not want to meet anyone… absolutely no one. Even when my relatives expressed a desire to visit, I adamantly refused. (P1.29)

Subtheme 10: Active Reconstruction of Social Relations

As physical recovery advanced, participants made deliberate efforts to restore social interactions. Initial feelings of resentment regarding communication difficulties transformed into an understanding of the heavy workloads faced by hospital staff. Supported by family counsel, participants engaged in emotional self-regulation, thereby reducing relational tension. They also expressed deep gratitude toward dedicated clinicians, while the return of mobility restored the self-confidence needed for gradual social reintegration.

Yes, in reality, they eventually understood that whenever I made that tapping code, it meant I needed help with suctioning… I used to feel so resentful, but now I do not anymore. (P1.45)

Yes… but then again, I realized the nurses faced immense professional demands as well… [My family advised me], ‘do not be resentful, they have so many critical tasks to attend to’. (P1.48)

I will remember the kindness of Brother S and Nurse J until the afterlife… God willing, if I am blessed with financial means in the future, I will always remember them. (P6.19)

After several months… once I reached the stage where I could finally walk again… even though I still had to bring a wheelchair along with me. (P1.31)

Theme 4: Spiritual Distress and Spiritual Resilience

This theme explores the spiritual journey of patients with Guillain-Barré Syndrome (GBS) throughout their illness. In the acute phase, participants reported spiritual distress, including fear of death, hopelessness, and internal struggles related to their beliefs. As recovery progressed, participants reflected on their illness and sought meaning in their experiences. During the recovery phase, many participants exhibited spiritual growth, as evidenced by renewed hope, increased appreciation for life, and strengthened relationships with God. Ultimately, the illness was perceived as a significant life trial that enhanced spiritual resilience. The subsequent section outlines each subtheme.

Subtheme 11: Acute Spiritual Distress

During the acute phase, severe physical pain and prognosis uncertainty combined to trigger intense spiritual distress. This manifested as immediate fears of mortality, particularly during the physical stress of blood filtration in TPE sessions. Some participants also reported temporary suicidal ideation driven by severe helplessness. Frustration occasionally led to spiritual alienation, where patients temporarily refused to engage in prayer or listen to scriptural recitations.

The thought that consumed me occurred during the second plasma exchange; my body felt so intensely crushed from all sides, and I felt with absolute certainty that I was dying. So, I just kept reciting my final prayers continuously. (P4.24)

I could only converse by responding with codes. The psychiatrist asked me how I felt—whether I felt sad, angry, or disappointed and I just nodded. Then they asked if there were any thoughts of wanting to end my life. I indicated yes, there were. (P1.20)

No, in fact, I explicitly refused. When they asked me to listen to Islamic Quranic recitations, I just said, ‘No need’. I was completely frustrated at that point. My heart felt closed off, and I didn’t want to pray. (P1.27)

Yes, how should I put it… I felt so anxious, there was absolutely no hope of survival or recovery at the very beginning. (P2.22)

Subtheme 12: Emergence of Illness-Based Reflection

As their clinical condition stabilized, participants entered an active phase of existential reflection. They experienced a transitional emotional space, moving away from initial denial and anger toward a conscious search for meaning. Despite lingering anxieties regarding the timeline of rehabilitation, a firm belief in recovery remained a central focus. Patients often evaluated their personal mortality, life choices, and religious practices during this reflective period.

Those feelings still surface occasionally, but they are nowhere near as intense as before. I do not throw angry tantrums anymore. But there is still a lingering trace of anger, like a form of denial. I still question why this happened, because I haven’t found a clear answer. (P1.43)

At that time, I believed recovery was possible… I was simply overthinking how long the process would take. (P3.13)

It sounds foolish, but I recalled being told as a child that if our good deeds are few, uttering repentance or the Shahada at the moment of death would be extremely difficult. Yet, in that critical moment, I uttered everything so clearly and smoothly… so I thought, ‘Well, I feel safe, my sins are many, but since it was smooth, maybe I won’t die just yet’. (P4.24)

Yes, now my primary desire is simply to be able to walk properly again… But indeed, those intrusive thoughts still occur, like, ‘I just got through one trial, and now another one is already appearing’. Thoughts like that still happen. (P7.46)

Subtheme 13: Spiritual Awakening and Agency

This reflective phase catalyzed a strong spiritual awakening, providing renewed internal strength to confront rehabilitation challenges. The drive to regain independence and return to active daily roles helped participants overcome the trauma associated with invasive procedures. This determination was strongly reinforced by a sense of responsibility toward family, particularly dependent children.

I just want to recover quickly and return to normal. I want to go back to work; I am deeply bored just staying at home. (P1.38)

Not at all, because my focus at the time was entirely on getting well. There was no lasting trauma because my mind was set on recovery. Mind you, if you were to ask me to undergo plasma exchange again right now, I’d say heaven forbid! [spoken while laughing jokingly] (P3.7)

I must fight and endure this struggle once again for the sake of my children. (P7.48)

Subtheme 14: Transformed Existential Meaning

Ultimately, navigating the crisis resulted in a profound existential transformation. Pathological suffering was re-contextualized as a meaningful life trial to be embraced with gratitude. Participants developed an increased awareness of health preservation, combining lifestyle adjustments with practical self-compassion. This journey also deepened their spiritual commitments, transforming a major health crisis into a milestone of spiritual growth.

Every single person is assigned their own unique trials in life; so we must simply endure it, accept it, and remain deeply grateful. The key is to maintain a resilient spirit in accepting it. (P2.55)

Just take care of your health. Watch your dietary habits, and whatever you do, never give up when illness strikes. (P2.57)

The ultimate meaning of this entire journey is simply this: please, learn to love and take care of your own self. (P3.23)

I want to be closer to Allah, and I never want to abandon my prayers again.

Discussion

Primary Findings

This study explores the lived experiences of patients with GBS undergoing TPE, spanning from the acute phase in intensive care to long-term recovery. Employing a descriptive-phenomenological approach, the research develops a multidimensional biopsychosociospiritual framework, articulated through four principal themes: bodily disruption and meaningful recovery; emotional distress and self-acceptance; communication barriers and relational re-establishment; and spiritual distress and spiritual resilience. The findings illustrate an existential trajectory that progresses from acute helplessness to a transformative reconstruction of meaning during recovery.

The findings indicate an existential journey that transitions from self-destruction to the reconstruction of meaning. In the context of Merleau-Ponty’s phenomenology,²⁰ this process represents a crisis of embodiment, where, in the body, previously a vehicle for being-in-the-world, becomes a source of suffering and alienation. GBS not only affects the peripheral nervous system but also undermines the ontological foundations of an individual’s existence as an empowered, communicative, relational, and meaningful subject.^21–24 According to Park’s Meaning-Making Model (2013),²⁵ threats to physical integrity, such as those experienced by the study participants, create a dissonance between situational meaning, the interpretation of the illness event, and global meaning, which encompasses belief systems and life goals established prior to illness. The reconciliation of these two levels of meaning constitutes the core of the recovery process for GBS patients and is empirically represented by the four themes identified in this study.

Physiological Dimensions: Bodily Disturbance, Therapeutic Burden, and Adaptation

Participants reported progressive motor weakness, paresthesias, and ventilator dependence as distressing and threatening bodily experiences. This finding aligns with Forsberg et al (2008),²⁶ who stated that the sudden loss of bodily control is a universal experience among patients with GBS. The TPE procedure imposes a substantial therapeutic burden, including rigors (severe shivering), fever, vascular access pain, and post-session fatigue.²⁶ These adverse effects are well-documented in the literature and can exacerbate the overall hospitalization experience.²⁷ This scenario presents a therapeutic paradox, as patients must undergo procedures that induce additional suffering to achieve recovery.²⁸ Nevertheless, most participants demonstrated positive therapeutic acceptance after understanding the long-term benefits of TPE,^27,29,30 highlighting the critical role of patient education in fostering tolerance for invasive interventions. During the recovery phase, residual symptoms such as stiffness, persistent weakness, and tremor continue to pose functional challenges. Recovery from GBS is often incomplete and necessitates long-term adaptation.^22,23,31

The findings on the burden of the TPE procedure in this study offer novel insights by explicitly examining patients’ subjective experiences during each therapy session from a phenomenological perspective. Previous research has primarily addressed the clinical efficacy and neurological outcomes of TPE, whereas the experiential dimensions of the procedure have received limited attention.³² The context of Indonesia as a developing country further shapes these physiological experiences, particularly due to limited intensive care unit (ICU) resources, nurse-to-patient communication ratios, and the availability of monitoring equipment, all of which influence the quality of symptom management during TPE. These findings emphasize the necessity of a person-centered care approach in GBS management in developing countries, where infrastructure constraints must be balanced with greater communication and empathy among healthcare professionals.

Psychological Dimensions: Progression from Acute Distress to Self-Acceptance

The progression from emotional distress to self-acceptance demonstrates that psychological responses in patients with GBS evolve gradually throughout the disease course. Diagnostic ambiguity is a significant source of psychological distress during the early phase, as some individuals initially receive a misdiagnosis of stroke before GBS is confirmed, resulting in somatosensory confusion and profound anxiety. In the acute phase, when physical changes occur abruptly and the diagnosis remains unclear, patients experience heightened uncertainty.^14,33,34 This lack of clarity regarding symptom etiology and disease trajectory generates confusion and ambiguity about their physical state. According to Uncertainty in Illness Theory, the inability to interpret symptoms and predict disease progression constitutes a primary source of psychological distress.³⁵ Consequently, emotional responses during this phase are characterized by confusion and a search for meaning.

In the later acute phase, particularly when physical deterioration occurs or intensive care is required, initial confusion intensifies into deeper emotional distress. When patients perceive the illness as a serious threat to their bodily integrity and experience a loss of control, stress responses may escalate to anxiety, frustration, and despair.²⁵ Existing literature indicates that the intensive care phase and protracted recovery frequently amplify feelings of helplessness and significant emotional distress among GBS patients.^9,36 At this stage, distress evolves from mere confusion into a more complex and profound emotional experience.

As clinical conditions stabilize during the transition to recovery, increased diagnostic certainty, comprehension of therapeutic interventions, and consistent social support facilitate cognitive restructuring in patients. Coping theory posits that reappraising the illness from an uncontrollable threat to a manageable situation enables the adoption of more stable, adaptive strategies and improved emotional regulation, thereby supporting the transition from distress to self-acceptance.²⁵ During recovery, self-acceptance emerges as patients gradually adjust to persistent physical limitations, recalibrate expectations of their bodies, and realistically reconstruct their self-identity.³⁶ The emotional trajectory thus progresses from confusion during the onset, to profound distress in intensive care, and ultimately toward self-acceptance during the transition and long-term recovery phases.

Social Dimension: Communication Barriers and the Reconstruction of Relationships

The theme of communication barriers and efforts to rebuild relationships demonstrates that patients’ social experiences with GBS evolve alongside changes in physical condition and care phase. During the acute phase, particularly when hospitalized in the intensive care unit and experiencing communication limitations due to muscle weakness or ventilator use, social interactions are severely restricted. The inability to verbally express needs creates substantial communication barriers, which several studies have described as experiences of frustration and loss of voice within the care relationship.²⁹

Endotracheal intubation (ETT) is the most significant communication barrier in the intensive care unit (ICU), leading to profound frustration when healthcare providers fail to recognize patients’ nonverbal cues. These findings are consistent with Happ et al (2011) who reported that the inability to communicate verbally during ICU care is a major source of distress for critically ill patients. That augmentative and alternative communication (AAC) remains underutilized in ICUs in developing countries. Additionally, social isolation resulting from strict ICU visitation policies further intensifies patients’ experiences of loneliness.

These findings are consistent with Happ et al (2011),³⁷ who reported that the inability to communicate verbally during ICU care is a major source of distress for critically ill patients. Notably, augmentative and alternative communication (AAC) systems remain markedly underutilized in ICUs across developing countries, further compounding the communication burden experienced by mechanically ventilated patients such as those with GBS. In addition, social isolation resulting from strict ICU visitation policies further intensifies patients’ experiences of loneliness.²⁶

In the later acute phase, continued dependence on healthcare professionals and ongoing restrictions on family visits contribute to deeper social isolation. Patients experience not only physical limitations but also emotional distance from their social environment. The literature on GBS patient experiences indicates that the transition from independent individual to critically ill patient often results in feelings of alienation and disconnection from prior social identities.⁹ According to Self-Determination Theory, the need for relatedness is a fundamental psychological requirement; when unmet, it can lead to distress and reduced well-being.³⁸

During the recovery phase, as physical function improves and communication abilities gradually return, patients experience changes in social dynamics. Confidence to re-engage socially begins to develop, often following a period of withdrawal driven by insecurity regarding physical condition. This withdrawal may serve as a temporary protective response to potential social evaluation. As patients regulate their emotions and adjust expectations of themselves and their environment, they actively work to rebuild disrupted social relationships. The literature indicates that social reintegration is a critical component of long-term recovery for GBS patients and is associated with improved QoL.⁹ The social trajectory of GBS patients thus progresses from communication barriers in the acute phase, to alienation and withdrawal in the later acute phase, and ultimately toward the reconstruction of social relationships during recovery.

Spiritual Dimension: Progression from Existential Crisis to Spiritual Resilience

The spiritual dimension in this study depicts the most dramatic yet still underdocumented journey in the literature on GBS. Studies have shown that serious illness often becomes a spiritual event that shakes an individual’s meaning system and triggers a crisis in previously stable beliefs. Spiritual distress in a clinical context is also associated with feelings of disconnection from the meaning of life, hope, and purpose.¹¹ In the acute phase, some participants experienced intense fear of death during TPE. Some participants even reported transient suicidal ideation as an expression of extreme helplessness. This finding is significant because it has not been explicitly reported in previous research on GBS. This condition aligns with the concept of spiritual crisis proposed by Murray et al (2004), a state in which a threat to life raises profound questions about the meaning of life, the purpose of existence, and an individual’s relationship with God.³⁹ However, this crisis phase slowly develops into the beginning of a spiritual awakening, when the desire to heal for the sake of the child and family serves as an existential anchor, providing a reason to persevere and continue the recovery process.

During the transition phase, as clinical conditions stabilize despite ongoing uncertainty regarding the future, spiritual distress persists but evolves. The spiritual experience at this stage deepens into a reflective process. Participants begin to question the meaning of their illness, contemplate their life trajectories, and reassess their spiritual relationship with God. This process is consistent with the Meaning-Making Model, which posits that individuals seek to reconcile stressful, threatening experiences with their overarching meaning system.²⁵ In this context, spiritual reflection serves as a critical intermediary between the initial crisis and the restructuring of life’s meaning.

In the early recovery phase, as physical improvement and emotional stabilization emerge, the reflective process develops into a more tangible spiritual awakening. Hope is reconstructed, expanding beyond mere survival to encompass aspirations of resuming meaningful roles and functions. Spirituality during this stage becomes a source of resilience, inner strength, and future orientation. The transition from despair to self-empowerment reflects a reorganization of the internal meaning system, facilitating adaptation to the illness experience.⁴⁰

In the stable recovery phase, participants exhibited existential transformation, marked by a profound sense of gratitude, recognition of illness as a spiritual test that imparts wisdom, and a desire for deeper connection with God. Several participants not only restored hope but also integrated the illness experience into a broader, more meaningful life narrative. Illness was reframed from being solely an existential threat to becoming a component of a life journey that fosters learning, value shifts, and personal growth. Previous research indicates that the capacity to find meaning in illness is closely associated with psychological well-being and positive post-traumatic growth.⁴¹ Accordingly, the spiritual journey observed in this study progressed chronologically from spiritual distress in the acute phase, to reflection during transition, to spiritual awakening in early recovery, and ultimately to transformation of meaning in the stable recovery phase.

Implications for Clinical Practice

These findings have important implications for critical care nursing and long-term rehabilitation teams. First, healthcare providers must look beyond purely clinical or physical indicators and adopt a holistic, biopsychosociospiritual approach to patient care. In the acute ICU phase, there is a critical need for enhanced communication support. Nursing staff should implement sensitive alternative communication strategies, such as non-verbal code systems, to reduce patient frustration and emotional distress caused by intubation and paralysis. Second, clinical protocols should incorporate routine spiritual and psychological screenings to identify early signs of existential distress or feelings of hopelessness. Finally, since residual symptoms like stiffness, fatigue, and anxiety persist for up to three years, healthcare systems should develop structured, long-term transitional care and peer-support networks. These programs are essential to guide GBS survivors through the ongoing process of meaning-making and functional adaptation in their daily lives.

Strength and Limitation

This study possesses several noteworthy methodological and conceptual strengths. First, to the best of our knowledge, this is one of the few qualitative inquiries that explores the lived experiences of patients with GBS undergoing TPE through a holistic biopsychosociospiritual framework. By evaluating the phenomenon across these four multidimensional axes, this study transcends purely physical or clinical evaluations, capturing the deep psychological trauma, communication barriers, and profound existential transformations that patients navigate from the acute ICU phase up to a three-year recovery trajectory. Second, this study strictly adhered to rigorous qualitative quality criteria to ensure trustworthiness (credibility, transferability, dependability, and confirmability). Data analysis was meticulously guided by Colaizzi’s seven-step descriptive phenomenological method, which provides a structured and transparent audit trail. Furthermore, the reporting follows the standardized COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines, ensuring international transparency.

Despite these strengths, several limitations should be considered when interpreting the findings. First, the study was conducted within a single healthcare setting involving patients with Guillain-Barré Syndrome; therefore, the findings are context-specific and influenced by the characteristics of the local healthcare system, social environment, and local culture. As a qualitative phenomenological study, the findings are not intended for statistical generalization but may offer transferable insights relevant to similar tertiary clinical contexts. Second, participants’ experiences were shaped by individual variations in clinical severity, family support structures, socio-economic backgrounds, and distinct illness trajectories, which may indicate broader experiential nuances not fully captured by this specific sample cohort.

Third, as phenomenological research positions the researcher as the primary instrument of data collection and interpretation, potential researcher bias cannot be entirely eliminated. Although reflexivity and explicit bracketing were rigorously applied throughout the study, the researchers’ background in critical care nursing may have subtly influenced the conceptual interpretation of participants’ narratives. Finally, recall bias may have occurred because several participants were interviewed up to three years after the acute phase of their illness. This temporal gap may have affected the participants’ ability to recall fine clinical experiences in vivid detail and may have influenced how they retrospectively reconstructed the subjective meaning of their illness over time. Nevertheless, within phenomenological inquiry, such retrospective reflections remain highly valuable, as they capture the authentic, long-term subjective meaning-making process across the entire illness trajectory.

Conclusion

This descriptive phenomenological study provides an in-depth understanding of the lived experiences of patients with GBS experiencing TPE from the acute illness phase through long-term recovery. By examining these experiences through a holistic biopsychosociospiritual framework, the study reveals that GBS is not merely a transient physical or neurological crisis, but a profound life disturbance that challenges every aspect of a patient’s existence. The findings show that while TPE is recognized as a vital, life-saving medical intervention, the procedure itself imposes severe physical and psychological burdens. Patients must navigate sudden body paralysis, painful interventions, and traumatic communication barriers within the ICU environment, which often leads to social isolation and deep spiritual distress. However, as physical function gradually returns, patients actively rebuild their social connections, find comfort in family support, and undergo a profound spiritual awakening. Ultimately, this journey transforms how they view their illness, turning a severe medical crisis into a meaningful life milestone that deepens their existential resilience and self-compassion. These findings translate into concrete nursing actions. The implementation of non-verbal communication code systems for mechanically ventilated patients during the acute ICU phase, and the integration of routine spiritual and psychological screening into follow-up protocols during the intermediate recovery period, to allow earlier identification and management of existential distress.

Disclosure

Dr Aan Nuraeni reports support for the manuscript from Universitas Padjadjaran, during the conduct of the study. All authors declare that there are no other conflicts of interest for this study.