Needs of patients and families during the wait for a donor heart

The time one must wait to receive a donor heart is unpredictable. Prior research provides insight into the stress experienced by both patients and families; however, there has been less emphasis on how nurses and others might influence this time from the patients' and families' perspectives.

The purpose of the present study was to explore patients' and family members' perceptions of what interventions were being used during their wait for a donor heart, the perceived effectiveness of those interventions, and what interventions not being used might be helpful.

The focus group technique was used in this qualitative study to determine patients' and family members' perceptions of the time spent waiting for a donor heart. Eleven participants (four posttransplant, four pretransplant, three family members) were recruited from the outpatient clinics of two health sciences centers. Videotaped focus group interviews provided participants the opportunity to describe the wait for a donor heart and their interactions with members of the health care team.

By using content analysis, tolerating uncertainty was the main theme describing perceptions of the time spent waiting. Subthemes represented helpful interventions provided by the health care team and others: sharing information; being sensitive to family; maintaining respect and dignity; doing the "extra little things;" and facilitating coping.

The results of this study provide information that health care professionals will find helpful in meeting the needs of patients and their families as they wait for heart transplantation.