What about the caregivers? Rethinking chronic illness support in the age of transplantation.

Abstract

Caregivers play an essential but often unacknowledged role in healthcare, particularly in chronic illness and post-transplantation scenarios. We highlight the profound emotional, physical, and logistical challenges caregivers face, as illuminated by recent studies, including the work of Virches et al about liver transplantation. Pre-transplant caregiving is marked by heightened stress, depression, and emotional strain, as caregivers navigate the unpredictability of conditions like cirrhosis. While liver transplantation significantly alleviates caregiver burden by stabilizing patient health, caregiving evolves rather than ends, requiring ongoing vigilance for post-transplant care, medication adherence, and lifestyle adjustments. We examine the disproportionate impact of caregiving on the family, due to entrenched cultural and gender norms and highlight how these disparities reinforce systemic neglect. Caregiving, often viewed as a familial duty, carries financial, mental, and physical health costs, perpetuating inequities and marginalization. We argue that caregivers are integral to healthcare outcomes and must be included in systemic frameworks to improve patient care. We also advocate for a paradigm shift from patient-centered to family-centered care, emphasizing caregiver inclusion as a core healthcare priority. Policy recommendations related to financial support, respite care, education, and mental health services should be tailored for caregivers. By addressing caregiver needs, healthcare systems can improve patient outcomes, reduce costs, and foster equity. This editorial underscores that caregivers are not ancillary but central to healthcare's success. Recognizing and supporting them is both an ethical responsibility and a practical necessity for sustainable healthcare.