Table 5 Concerns about living kidney donation that participants reported having personally or hearing from family or friends

General long-term effects

Q1: “I knew it was a fairly routine surgery, but how would it affect me not in 2 years, 3 years, but in 10 years, 20 years.”

Recovery process

Q2: “I felt the operation would be a huge deal. Painful recovery, long recovery, the whole thing.”

Recipient’s health

Q3: “I didn’t have any concerns when I considered giving. My concern was for my recipient.”

Surgical risk

Q4: “Understanding the risks in general of having a surgery, especially one that I wasn’t supposed to get any medical benefit from.”

Donor’s remaining kidney failing

Q5: “The biggest concern was what would happen as I got older, and knowing that kidney function can sometimes decline as you got older. Would that potentially put me at risk for kidney failure?”

Being a related or directed donor

Q6: “I had another brother who was showing signs of microscopic hematuria, so I was afraid this was something familial for us.”

Lifestyle limitations after donation

Q7: “You know, things that I shouldn’t do or things that I would need to avoid, medications that I would need to avoid.”

Endangering the family unit by donating

Q8: “I think it was just a concern that I would jeopardize my own health and therefore my long-term ability to provide for my own family.”

Not allowed to be donor

Q9: “My primary concern was that… something would happen and I wouldn’t be acceptable for some reason.”

Incision or scar

Q10: “That was one of the biggest things I was worried about – what the scars would end up looking like.”

Spouse being afraid

Q11: “The main concern was interacting and communicating with my wife about it. She was cautious and fearful about me making that decision.”

Future family need for a donated kidney

Q12: “Will anyone else in my family need a kidney?”

Donated kidney would fail

Q13: “What happened if the kidney did not work after being placed in the recipient?”

Insurance issues

Q14: “My wife was worried about life insurance policies, and if – and even my health insurance policy.”

Effect on longevity

Q15: “Basically, would it shorten my life expectancy or anything like that.”

Mental health

Q16: “My husband was very concerned about my wellbeing, my psych health.”

Future pregnancies

Q17: “Will I have any problems with pregnancy in the future?”

Religious concerns

Q18: “As I found out after listening to them, Jews are supposed to be buried entirely, with all their organs and everything…so most of my friends were concerned about me in the coming world, in the afterlife.”

Employment

Q19: “My main concern was the length of time I would have to be off work.”