HRSA Organ Donor Cognitive Script q15e_02 07 2012

I’m going to ask you a question and then get your feedback on what you think this question is asking.

15e. Recent medical breakthroughs have succeeded in the transplant of faces and hands. For example, for people who have suffered loss of limbs in war or through other traumatic injuries. How willing would you be to donate each of the following after you are deceased, would you be (interviewer read 4-1) (Read and rotate A&B)

4 Very willing

3 Somewhat willing

2 Not very willing

1 Not at all willing

5 (DK)

6 (Refused)

1. To donate your hands

2. To donate your face

C1. In your own words, what do you think this question was asking?

C2. What do you think is meant by a hand transplant?

C3. What do you think is meant by a face transplant?

C4. Is there anything we could do to help you improve your understanding of these questions?

The team reviewed the questions with 6 individuals – 6 males, 5 females. The group included 2 African American and 4 Hispanic participants, and included 3 Spanish interviews.

C1. In your own words, what do you think this question was asking?

Respondents indicated that they thought the question was asking if they will donate their face or hands or how willing they would be to donate their face in hands. Respondents noted that this was asking about their willingness to do this after their death.

One respondent noted that the donation would be going to someone who needed it. Another respondent noted they didn’t interpret this as a question about organ donation because they didn’t think of hands as organs.

Two respondents noted that this was asking if he would donate his hands or face to a veteran who had been injured. A third respondent asked if the donation was only for those who had sustained injuries through the military, and indicated this was because of the wording “for people who have suffered loss of limbs in war.”

C2. What do you think is meant by a hand transplant?

Respondents indicated that a hand transplant requires cutting off your hand and giving it to someone else. One respondent was not aware that hands could be donated and asked if it was very rare. One respondent noted that it was donating to someone who had lost their hands.

Another respondent noted that this may involve giving a finger or part of a hand to a person; another specifically noted that this could involve donating tissues, fingers and tendons. A third respondent was unsure whether this just included the palm, or entire hand and arm.

C3. What do you think is meant by a face transplant?

Respondents noted that a face transplant required taking off skin and muscles to give them to someone who was alive. One respondent noted it was putting their skin on top of someone else’s face. Another respondent indicated this could involve giving part of your face. Another respondent noted that this was just asking to donate the skin of your face.

When asked in Spanish, one respondent answered that they did not know what this question was asking. Another English-speaking participant indicated they did not know what a face transplant was.

C4. Is there anything we could do to help you improve your understanding of these questions?

Respondents noted that they understood the question well. One respondent noted that more information and details around what is meant by hand and face transplants would be useful. One respondent asked for clarification on whether donations were for veterans or the general population.

One respondent noted that more information on what exactly was being donated would be helpful.

One respondent indicated that they would want to know how their deceased body would look at their funeral if they made a donation, and indicated that this knowledge would influence their decision to donate or not.

The question did take the respondents a fair amount of time to answer as they contemplated how they wanted to respond.

Asking this in person and to people who know the interviewer was challenging because the respondents felt they had to answer positively, although the question clearly made them uncomfortable.

3

HRSA National Organ DONOR Survey