‘You have got a foreign body in there’: renal transplantation, unexpected mild-to-moderate distress and patients’ support needs: a qualitative study

Abstract

ObjectiveTo explore why transplant patients experience unexpected mild-to-moderate distress and what support they may need.DesignQualitative study using individual in-depth interviews.SettingFour National Health Service (NHS) Trusts in the Midlands, UK.ParticipantsFifteen renal transplant patients meeting the criteria for mild-to-moderate distress from their responses to emotion thermometers.Main outcome measuresIdentification of the reasons for distress and support options acceptable to renal transplant patients.ResultsThree themes were interpreted from the data: ‘I am living with a “foreign body” inside me’, ‘why am I distressed?’ and ‘different patients want different support’. Following their transplant, participants felt that they should be happy and content, but this was often not the case. They described a range of feelings about their transplant, such as uncertainty about the lifespan of their new kidney, fear of transplant failure or fear of the donor having health conditions that may transfer to them. A few experienced survivors’ guilt when others they had met at the dialysis unit had not received a transplant or because someone had died to enable them to receive the transplant. No longer having regular contact with the renal unit made participants feel isolated. Some participants did not initially attribute the source of their distress to their transplant. Participants’ preferred support for their distress and their preferences about who should deliver it varied from peer support to seeing a psychologist.ConclusionsRaising the issue of post-transplant mild-to-moderate distress with patients and encouraging them to think about and plan coping strategies pretransplant may prove beneficial for the patient and healthcare provider. Patients should be able to choose from a variety of support options.