"I just wanted nothing more than to get in a real shower": Patient Experience of the Inpatient Wait for a Heart Transplant

Author Department

Medicine; Healthcare Quality; Cardiology

Document Type

Article, Peer-reviewed

Publication Date

6-2023

Abstract

Objectives: To describe the inpatient experience among patients waiting for a heart transplant and to better understand the needs of inpatients waiting for heart transplant.

Background: Patients waiting for heart transplant may be hospitalized for weeks to months prior to transplant. This high-stress period is further complicated by restrictions of daily privileges including diet, rooming, access to the outdoors, and hygiene (e.g., limited in ability to shower). However, there is a paucity of research on the experience of this waiting period.

Methods: We conducted in-depth, semi-structured phone interviews with a purposeful sample of patients who received a heart transplant in the past 10 years and waited in the hospital for at least 2 weeks prior to surgery. Using the prior literature, the lived experience of the lead author, and input from qualitative experts, we developed an interview guide. Interviews were recorded, transcribed, and analyzed in an iterative process until theoretical saturation was achieved. A three-person coding team identified, discussed, and reconciled emergent themes.

Results: We conducted interviews with 15 patients. Overarching themes included food, hygiene, relationship with health care professionals, living environment, and stressors. Patients reported that strong bonds were formed between the patients and the staff, and the overwhelming majority only had positive comments about these relationships. However, many expressed negative comments about the experience of the food and limitations in personal hygiene. Other stressors included the unknown length of the waiting period, lack of communication about position on the transplant list, worry about family, and concerns that their life must be saved by the death of another. Many described that they would benefit from more interaction with recent heart transplant recipients.

Discussion: Hospitals and care units have the opportunity to make small changes that could greatly benefit the experience of waiting for a heart transplant, as well as the experience of hospitalization more generally.

Keywords: Heart Failure; Heart Transplantation; Patient experience.

PMID

37315836

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