Waiting for a heart or lung transplant: Relatives' experience of information and support

Abstract

Objectives: To describe the relatives' experiences of information and support while heart or lung transplant candidates were waiting for a transplantation.

Methodology/design: The critical incident technique was used. Incidents were collected via interviews with 18 relatives (28-73 years old) of heart or lung transplant patients within four weeks of the patients being accepted onto the transplant waiting list.

Findings: A total of 286 important events, both positive and negative, were identified and divided into two main areas: "Experiencing information and support" and "Reflecting upon information and support." "Experiencing information and support" was associated with "dissatisfaction with the health-care system", "being relatively satisfied", "supporting patients" and "the role of social networks." "Reflecting upon information and support" was associated with "finding strength" and "uncomfortable with emotions". Relatives experiences suggest that needs can be met through specific targeted information and support for them as well as mediating contact to previously transplanted persons.

Conclusion: The findings indicate a gap between the information and support that relatives need and receive, and that more attention should be paid to information and support for this group. By increasing awareness among healthcare professionals and the community, interventions can be developed that benefit relatives.

Keywords: Chronic illness; Communication; Family; Spouse; Transplantation; Waiting list.