Identifying Needs and Barriers to Engage Family Members in Transplant Candidate Care

Introduction: Friends and family members provide critical support to patients on the waitlist for deceased donor kidney transplantation. However, little is known about how best to support and engage them effectively to improve patient outcomes. Methods: We conducted 5 focus groups with the family members of patients on the waitlist for a deceased donor kidney (n=23) to identify individual- and group-level targets for an intervention. Discussions encouraged participants to reflect on their support roles, experiences at the transplant evaluation, interactions with providers, knowledge of transplant options and expected outcomes. Transcripts of study sessions were coded using an iterative and inductive process. Results: The thematic analysis produced two main themes related to experiences providing care to patients on the waitlist for kidney transplantation. First, participants revealed that supporting a patient on the waitlist created challenges that reverberate through their entire social structure. Family members discussed frustrations with adapting to their patient’s kidney health needs, feelings of isolation, and barriers to identifying and building effective support networks. Second, participants described multiple challenges that prevented their patient-family unit from making informed decisions about transplant care. These challenges included communication with their patient, patients resisting help, difficulty understanding the information, and feeling helpless. Conclusion: Family members providing care to patients with end-stage kidney disease require targeted support to overcome the unique challenges associated with their role in helping to meet their patient’s clinical needs. Interventions to engage friends and family members in the care of kidney transplant candidates need to effectively address these challenges.

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Geographic Variation in End-Stage Renal Disease Incidence and Access to Deceased Donor Kidney Transplantation

American Journal of Transplantation ◽

10.1111/j.1600-6143.2010.03043.x ◽

2010 ◽

Vol 10 (4p2) ◽

pp. 1069-1080 ◽

Cited By ~ 73

Author(s):

A. K. Mathur ◽

V. B. Ashby ◽

R. L. Sands ◽

R. A. Wolfe

Keyword(s):

Kidney Transplantation ◽

End Stage Renal Disease ◽

Disease Incidence ◽

Deceased Donor ◽

Donor Kidney ◽

Deceased Donor Kidney ◽

Stage Renal Disease ◽

End Stage ◽

Donor Kidney Transplantation ◽

Deceased Donor Kidney Transplantation

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Kidney transplantation in Kazakhstan: the burden of organ shortage

Russian Journal of Transplantology and Artificial Organs ◽

10.15825/1995-1191-2021-2-36-40 ◽

2021 ◽

Vol 23 (2) ◽

pp. 36-40

Author(s):

S. A. Abdugafarov ◽

M. N. Assykbayev ◽

D. J. Saparbay

Keyword(s):

Kidney Transplantation ◽

Kidney Disease ◽

Kidney Transplant ◽

Survival Rates ◽

Graft Function ◽

Deceased Donor ◽

Organ Shortage ◽

Donor Kidney ◽

Deceased Donor Kidney ◽

End Stage

Kidney transplantation has been the best replacement therapy for end-stage kidney disease for over 60 years. The Republican Coordination Center for Transplantation reports that as of January 29, 2020, there were 2675 people on the kidney transplant waiting list in the Republic of Kazakhstan. The issue of deceased donation in Kazakhstan is problematic for various reasons. Over the past couple of years, the already low rates of deceased donors have fallen by more than 2 times.Objective: to objectively assess the effectiveness of deceased-donor kidney transplant in order to indicate the need for development of cadaveric donation and reduce the number of patients in the transplant waitlist.Materials and methods. Fifty-two kidney transplants from a deceased donor were performed at the National Research Oncology Center (NROC) from 2010 to 2020. The age group of recipients ranged from 20 to 75 years old. In most cases, end-stage chronic renal failure resulted in chronic glomerulonephritis (76%), pyelonephritis (1.9%), polycystic kidney disease (9.6%) and diabetic nephropathy (11.5%).Results. The 1-year and 5-year survival rates were 96% and 86%, respectively. There was delayed graft function in 13 of cases. In one case (1.92%), there was intraoperative hyperacute rejection of the kidney transplant that could not be treated with high doses of glucocorticosteroids; the kidney graft was removed. Two patients (3.8%) in the early postoperative period, on days 2 and 7 after surgery, developed a clinic of acute renal transplant rejection; after the rejection crisis was stopped by drug therapy, graft function was restored. One patient (1.92%) died as a result of bilateral pneumonia, which led to sepsis and death.Conclusion. Graft and recipient survival rates after deceased-donor kidney are comparable to those after living-donor kidney transplantation. The solution to the problems of increasing the number of deceased organ transplants should not rest entirely on the shoulders of transplant doctors; this task must also be addressed at the government level with constant propaganda to explain to the citizens the need for a deceased organ donation program.

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