Life After Esophageal Cancer-Loss, Eating Challenges, and Reclaiming Control: A Qualitative Study of Rehabilitation,...

Patients treated for esophageal cancer (EC) often experience severe and persistent late effects that impact their daily lives. While the physical consequences of treatment are well documented, less is known about how patients and their caregivers navigate rehabilitation and support needs together after treatment completion. Understanding their shared experience is critical for improving survivorship care.

This study aimed to explore the experiences of patients and caregivers regarding late effects, rehabilitation, and support needs after EC treatment.

A qualitative study was conducted using a phenomenological-hermeneutic approach grounded in Ricoeur's theory of interpretation. In-depth interviews were conducted with 11 patients and 10 caregivers, 13-27 months after treatment.

Participants described profound physical and emotional challenges, including eating difficulties, fatigue, anxiety, and a sense of loss. Caregivers felt invisible in the healthcare system, despite being central to patients' rehabilitation. Three themes were identified: (1) Left on the platform beyond treatment, (2) The taste of loss: navigating eating in everyday life, and (3) Reclaiming control despite the influence of late effects.

The findings highlight that EC survivorship is a shared and transformative process for patients and caregivers, often marked by uncertainty and insufficient follow-up support. Transitioning from hospital to home care represents a critical vulnerability.

Nurses play a key role in bridging the gap between treatment and survivorship. There is a pressing need for family-centered follow-up care that includes tailored nutritional support, psychosocial guidance, and long-term symptom management.