Introduction

Transplantation is the gold standard approach in the treatment of heart failure, resulting in longer survival and quality of life. However, high demand and donor shortage lead to long queues in which patients experience ambiguous feelings of hope and frustration between life and death.

Objective

To understand the experience in the heart transplant waiting list from the perspective of patients and their families.

Method

Descriptive and exploratory research with a qualitative approach, conducted with 12 participants: six patients who were waiting for heart transplantation and six family members. They answered a semi-structured interview script, which was evaluated by textual analysis using the Iramuteq software (Interface for R for Les Multesanalysis de Textes et de Questionnaires).

Results

It was evident that the discovery of the diagnosis and the need for transplantation was permeated by feelings of sadness and fear, requiring reorganization of the family structure and use of different coping strategies. The difficulties experienced in waiting for an organ include the emergence of clinical complications that can take the life of the patient or prevent surgery, and the constant refusal of possible donors on the part of the family.

Conclusion

The waiting list for heart transplantation is a moment of “race against time for life”, permeated by anxiety, hope and frustration, in which family support is essential. It is also essential to invest in organ donation campaigns and training professionals to make a correct approach to families when it comes to talk about potential donors, embracing their grief and clarifying their doubts.

        · abstract in Spanish | Portuguese     · text in English | Spanish | Portuguese     · English ( pdf ) | Spanish ( pdf ) | Portuguese ( pdf )