Finding a living kidney donor: experiences of New Zealand renal patients

Abstract

A living donor kidney transplant (LDKT) is the preferred treatment for many people with end stage renal failure but there is a significant and growing gap between the number of people who might benefit from a transplant and those who receive one in New Zealand. International research suggests a range of barriers for patients in the journey to LDKT. One hundred and ninety-three patients on the New Zealand waiting list for a kidney transplant responded to a postal survey about live transplantation. While many patients are willing to discuss LDKT with family and friends, most are reluctant to go on to ask others directly to consider live donation. Patients who have not discussed LDKT with others are significantly less likely to have received even one offer from a potential donor. Pākehā and Māori are more likely to have received an offer to donate and to have had someone go on to be tested for compatibility than either Pacific or Other ethnic groups. Information gaps, ineffective donor recruitment strategies, donor incompatibility and donor medical unsuitability appear to be major barriers to LDKT. Many barriers are amenable to intervention and the implications for policy and practice are discussed.

Barriers to live donor kidney transplants in the pediatric population: A single‐center experience

“…In the current study, caregiver barriers to live donor transplant were reported by 71% of the families. Several caregiver barriers cited in the current study are echoed in the adult literature, including barriers related to social support, work demands, fear, including fear of negative medical consequences following donation or that someone else in the family may need the donated organ, lack of knowledge, a general discomfort asking others to donate and guilt about coercion or being a burden, and concerns about immigration status . In our study, lack of social support as evidenced by a single caregiver in the family was also an important deterrent factor for live donation.…”

“…Similar barriers have been observed in published studies of adult recipients. For example, in a New Zealand study, 30% of potential donors were turned away for medical reasons . Some studies have also noted reports of the donation process being overwhelming, resulting in difficulties navigating the healthcare system …”

Parents’ experiences of donation to their child before kidney transplantation: A qualitative study

“…Martin () found that kidney recipients were willing to discuss donor possibilities with their family and friends. However, most were reluctant to go on to ask others directly to consider live donation (Martin ()). The findings of the current study reflect strong parental emotional feelings when faced with the suffering of a child with ESRD, and the maintenance of hope of health progression through living donor kidney transplantation in the near future.…”

“…We found no publications that have addressed this topic from a parent perspective. Martin () found that kidney recipients were willing to discuss donor possibilities with their family and friends. However, most were reluctant to go on to ask others directly to consider live donation (Martin ()).…”

The causes and importance of racial disparities in pediatric transplantation in New Zealand

“… Fewer potential donors at assessment. Martin has recently shown that adult Maori and Pacific renal patients are far less likely to have a donor present for assessment as a donor despite being as likely to discuss donation with family and friends. It is unclear why this is but she suggests improving the quality of the information available for patients and their potential donors and initiating facilitated enlarged family group meetings. …”