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.