‘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.

Dialysis, Distress, and Difficult Conversations: Living with a Kidney Transplant

“…The results of this qualitative study expand on existing literature regarding psychosocial distress experienced by kidney transplant recipients [ 24 , 25 , 26 , 27 ] by providing a more in-depth understanding of particular concerns experienced. Participants perceived graft failure as life-threatening, causing varying degrees of anxiety of dialysis initiation, re-dialysis, re-transplantation, or even immediate death.…”

Langfristige körperliche und psychische Folgen chronischer Nierenerkrankungen

“…Mit der langen Wartezeit auf ein passendes Spenderorgan sind nicht nur die medizinischen Probleme verbunden, sondern immer auch Ängste, wie etwa die Sorge, dass ein Organangebot doch bald eintrifft, oder Bedenken, ob die Transplantation erfolgreich verlaufen wird und das transplantierte Organ auch möglichst lange funktionstüchtig bleibt [ 58 ].…”

Video as an alternative to in-person consultations in outpatient renal transplant recipient follow-up: a qualitative study

“…Can adequate care be provided should there be the need for a physical examination? Renal transplant recipients may also feel isolated after the transplantation, with the contact with the hospital being considerably reduced [31]. Patients' emotional and support needs should not be overlooked [31,32] but may be more challenging to detect and address when not meeting the patient in-person.…”