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Caregivers of patients with chronic diseases are unpaid providers, whose contributions to healthcare and patient outcomes are well recognized. We sought to obtain the perspectives of those who have supported a kidney transplant recipient with a failing or failed graft.

This qualitative study adopted an interpretive-descriptive methodology. Data collection entailed semistructured interviews that were analyzed thematically.

Twenty-three caregivers (spouses = 11, parents = 10, and siblings = 2) reported that graft loss did not introduce new roles or responsibilities. However, the caregiver burden intensified because of the following: supporting recipients' wellbeing (emotional support and attention to social needs); adapting to the new reality of graft loss (dietary management, home dialysis support, logistical coordination for medical appointments, and treatments); navigation of care (information tracking and communication and advocacy); and managing multiple roles and responsibilities (increased household and parental load and balancing employment and caregiving). Care gaps included more focus on the graft instead of the person (clinical prioritization of the graft and lack of attention to mental health and emotional aspects of graft loss); communication shortcomings; and inclusion of caregivers in patient care (not recognizing the value of caregiver input and lack of role definition). Recognition of emotional labor and support; educational resources tailored to the graft loss phase; training and tools to fulfill the role of caregivers; peer support; and social work were the desired resources.

Caregivers of kidney transplant recipients experience heightened burden with graft loss and reported feeling undervalued. We recommend strategies to better integrate, support, and educate these caregivers, as it may enhance both their well-being and the outcomes of recipients who experience graft loss.