Self-management challenges and support needs among kidney transplant recipients: A qualitative study

Abstract

Aims: This study investigated self-management challenges and support needs experienced by kidney transplant recipients.

Background: After kidney transplantation, recipients are expected to take an active role in self-management. However, evidence suggests that nurses experience difficulties operationalizing self-management support. Greater insight into the recipients' perspective could help to improve the adequacy and efficacy of nurse-led self-management support.

Design: A cross-sectional qualitative study.

Methods: Focus groups and individual interviews were carried out with kidney transplant recipients treated in a Dutch university hospital. Directed content analysis (DCA) was used.

Results: Forty-one kidney transplant recipients participated. Challenges after transplantation included becoming an expert patient, adjusting daily life activities, dealing with medical regimen, forming relationships with nurses, dealing with social consequences, dealing with emotions related to transplantation and the donor and improving self-image. To be able to deal with these challenges, participants wished to receive disease specific knowledge and instruction, share personal experiences with fellow patients, share and discuss not only medical but also emotional and social issues with nurses and wanted to be encouraged through positive feedback. "One-size fits all" education was considered insufficient in meeting their needs.

Conclusions: After kidney transplantation, recipients experienced various challenges in dealing with the medical, emotional and social tasks. Current support from nurses overlooked recipients' emotional and social support needs. Nurses need adequate tools and training to be able to meet recipients' self-management support needs.

Keywords: coping; end-stage renal disease; intervention development; nurses; organ transplantation; qualitative research; self-care; self-management; the Netherlands.