Nearly half of people who need a new kidney chose not to ask family or friends to donate one of theirs, preferring to wait for someone to offer, a new study has found.

Even chronic kidney disease sufferers who felt confident discussing their need for a kidney admitted that it was difficult for them to approach others, with a recurring theme being that “it’s hard to ask”.

For the first time in New Zealand, researchers from Otago University have surveyed end-stage renal disease (ESRD) patients about whether they felt comfortable asking loved ones for a kidney, what the barriers were and their advice to others in the same situation. The resulting study has just been published in the May 4 edition of the New Zealand Medical Journal.

All participants said they found the topic a hard one to discuss, and that needing a donor was ‘a highly emotional experience’ whether they were asking for a kidney or being offered one.

The study found people requiring a kidney donation often experience a huge amount of stress and conflicting emotions. They can be worried about how it will affect personal relationships, fearing that their request might be declined, or that the donor might need to give their kidney to a more ‘deserving’ family member in the future. They may be concerned that the donor’s health would be put at risk.

Patients can also feel obligated – that they could never repay the ‘gift’ of a kidney – as well as guilty, should the kidney be rejected.

Other barriers to getting a transplant were personal factors such as a lack of confidence, inability to communicate or limited health literacy.

The study also found that some ESRD patients, rather than ask friends or relatives directly for a kidney, are turning to social media sites such as Facebook in the hope that sharing their story might help recruit donors.

Although the study was small – just 15 participants – it did highlight some differences between Māori and non-Māori ESRD patients.

For some Māori, living kidney donation (LKD) may not even be an option, the study found.

Many of the study’s Māori kidney disease sufferers had limited opportunities due to comorbidities, or associated diseases, within extended whanau, making the decision of who to approach difficult.

Several Māori participants said they would never take a kidney from a loved one, while others felt burdened by taking a kidney from a living donor.

Other participants, mostly Māori, had turned down all offers to donate, preferring to wait until a deceased kidney became available.

Recipients told researchers that they wanted more help and support with approaching donors. This could include psychological, counseling and cultural support, as well as better education. Participants who had a good understanding of their renal disease and treatment options were more likely to be proactive in trying to recruit donors. Meanwhile only two of the 15 participants knew that donating a kidney was not likely to cause long-term harm to the donor.

The study’s co-authors, Merryn Jones and Jon Cornwall, suggest that a New Zealand-specific screening tool be developed to assess factors such as willingness and motivation to proceed with transplant, communication skills and cultural needs.

“Psychosocial support could help address barriers such as reciprocity concerns,” they add.

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